In this chapter, the U.S. Department of Health and Human Services (HHS) highlights evaluations of general interest to the public health, health care services, and human services community, and illustrates the diversity of HHS evaluations completed in fiscal year (FY) 1998. Included are summaries of eight evaluation projects selected by the HHS Evaluation Review Panel, a group of outside evaluation experts. The Panel reviewed 24 reports nominated by HHS agencies and selected the reports to be highlighted in this chapter on the basis of the following criteria:

• Is the report important? Does it address a significant issue or problem for which evaluation would confirm or change program direction, or measure program impact? Are the findings likely to be useful and generalizable?
• Is the report methodologically sound? Are its concepts, designs, data collection, and analyses conducted and reported in a competent manner?
• Is the report faithful to the data? Do the conclusions and recommendations logically follow from the data and analyses, and are they relevant to the questions asked?

The eight studies are organized under three headings: program effectiveness evaluations, performance measurement, and environmental assessment. These headings represent the four most common uses of HHS evaluation resources. Program effectiveness evaluation provides a way to determine the impact of the Department's programs on achieving intended goals and objectives. Performance measurement is the primary mechanism used to monitor annual progress in achieving departmental strategic and performance goals and determine the effectiveness of program strategies or specific program activities in achieving those goals.Environmental assessment is the way we understand the forces of change in the health and human services environment that will influence the success of our programs and the achievement of our goals and objectives.

Each summary includes a brief abstract; a description of the study (including its purpose, background, methods, findings, and use of results); the names of any publications that resulted; and the name and phone number of the HHS official to contact for additional information.

A. PROGRAM EFFECTIVENESS

Building Opportunities, Enforcing Obligations: Implementation and Interim Impacts of Parents' Fair Share

Highlights: Parents= Fair Share (PFS) program model began in 1992 as a two-year pilot project by Manpower Demonstration Research Corporation (MDRC). This report represents the initial findings on program implementation and the initial impacts on several key outcomes. This interim report, which is one of several reports that will be released about the demonstration project, describes how PFS services were implemented, offers insights into challenges of the program and how they might be addressed, and provides information on the background of the parents in the PFS research sample. These early findings address the program=s initial success in meeting two of the three demonstration goals: 1) increasing employment and earnings, and 2) raising the child support payments of non-custodial fathers.

Findings from the first 18 months of the project indicate that PFS did increase the number of fathers who paid child support, but with no corresponding increase in those fathers= employment and earnings. Multiple factors contribute to the lack of non-custodial support to children who are poor. Non-custodial fathers who are able to pay child support will do so with some assistance and those who do not have multiple reasons for not paying support. Government-wide programs that offer a variety of support services to non-custodial fathers can impact the level of child support provided to their children. This report is based on administrative data on child support collections and earnings. The final evaluation report will include survey results from both custodial and non-custodial parents.

Purpose
The purpose of this pilot project was to implement a unique cooperative arrangement between the child support system, local community-based organizations and non-custodial fathers. It was hoped that with supportive services, such as peer group assistance, non-custodial fathers would increase their involvement with their children. It was further hoped that, with employment training and job location assistance, these fathers would find employment and increase their earnings, thereby placing themselves in the position to pay child support and to pay it in a timely fashion. The ultimate goal of this project, therefore, was to effect a system that would support more responsible non-custodial parenting.

Background
Parents Fair Share (PFS) was formed as a result of three interrelated trends and the dilemma facing courts and child support administrators. First, welfare reform efforts that gained momentum in the 1980's shifted responsibility for supporting poor children away from the public sector to the parents. Second, since the mid-1970's, continuing through the 1996 welfare law, the Federal government has required States to strengthen child support enforcement (CSE). The goal is to help low-income families stay off welfare and to recoup money spent on welfare recipients. The focus has largely been on non-custodial parents with income and assets. The research indicates, however, that a significant portion of non-custodial parents (usually fathers) of children receiving welfare have few financial resources and unstable residencies and employment.

The third trend that led to the development of PFS is the rapid decline in job opportunities for less educated men. Public policy programs have largely focused on parents receiving welfare (mostly women) and dislocated workers. Men, especially those of color, were largely overlooked in employment outreach programs and few programs were successful in increasing their employment and earnings. Thus, the growing importance of child support for poor families, low earnings and sporadic employment of men of color and the lack of alternative programs for those who are unemployed, creates a dilemma for child support administrators and the courts.

The PFS program offers a solution by offering employment referrals and job training opportunities.

To test the feasibility of the PFS approach, MDRC launched a two-year pilot phase in 1992. There were three overall goals for the pilot project: (1) to increase employment and earnings of unemployed non-custodial parents (mainly fathers) of children receiving welfare; (2) to increase child support payments; and (3) to support and improve the parenting behavior of these parents. The pilot experience was promising enough to warrant a more rigorous test of the programs= effects on non-custodial parents= employment rates, earnings, and child support payments, and on aspects of their parenting skills, and their children=s well-being. This is a report of the second test of the program=s effectiveness, which began in 1994.

Methods
The study was based on a research design where eligible non-custodial parents were assigned, at random, to one of two groups: a program group that accessed the program=s services or a control group that could not receive those services. The analysis compared the labor market, child support payment, and parenting experiences of the two groups. All differences that were measured between the two groups were attributable to the Parents= Fair Share program.

Findings
During the first 18 months of this project, PFS did increase the number of fathers who paid child support. However, only three sites reported increases: Grand Rapids, Dayton and Los Angeles. These sites reported sizeable increases in the number of fathers paying child support, but not in the amount they paid. Those fathers who paid support as a result of PFS already had the means to pay something, but would have paid nothing without PFS support. The findings also suggest that one of the factors common to two of the sites that increased child support payments was the strong involvement of the Child Support Enforcement (CSE) agency.

In contrast, during the first 18 months of this project, none of the sites produced consistent and statistically significant increases in non-custodial fathers= employment and earnings. In fact, during the first quarter, 50.3 percent of PFS fathers worked, compared with 51.9 percent of control group fathers. PFS produced no significant impacts on employment. Also, average earnings were no different, statistically, between the two groups. Reasons for the lack of success were not clear, although most of the sites were not able to provide a full range of employment and training services. These services were to include basic education, job search assistance, skills training, and on-the-job training. It was also found that on-the-job training was the most difficult component to develop.

The data revealed that many of the non-custodial fathers had problems that hampered their ability to obtain and keep jobs, such as a history of drug abuse, criminal backgrounds or poor education preparation.

Use of Results
This study revealed that it is possible to increase the payment of child support by non-custodial fathers through enhanced outreach and focused case review. PFS was not able to significantly impact the employment and earnings status of the fathers in the study sample. Many factors contributed to this failure, including the fact that many fathers enrolled in the program with the expectation they would obtain better jobs and thus higher pay. Their refusal to accept any job because they were holding out for the ultimate Abetter@ job caused higher unemployment rates for these fathers at certain sites.

The challenges presented by this demonstration program model provide clear, substantive information for those who seek to replicate such a program. Program support can impact the level of child support to poor children by their non-custodial fathers. Non-custodial fathers who are able to pay child support will do so with some assistance. Those who do not pay have multiple reasons for not paying such support. Thus, multiple factors contribute to the lack of non-custodial support to children who are poor.

AGENCY SPONSOR: Administration for Children and Families, Office of Planning, Research, and Evaluation and Office of Child Support Enforcement

FEDERAL CONTACT: Mark Fucello

PHONE NUMBER: 202-401-4538

PERFORMER ORGANIZATION: Manpower Demonstration Research Corporation, New York, NY
 

Evaluation of the WomanKind Program: Support Systems for Battered Women

Highlights
This study was conducted to document the extent to which the Minnesota-based WomanKind program influenced the quality of intervention by health care providers to victims of intimate partner violence (IPV)⁽¹⁾. The WomanKind program is based on the premise that the health care setting offers a unique opportunity to intervene and offer support, options and referrals to IPV victims. WomanKind has been successful in training health care providers in hospital and clinic settings and in establishing an ongoing supportive connection between the health care setting and community resources. The evaluation was conducted by the National Center for Injury Prevention and Control, of the Centers for Disease Control and Prevention (CDC). WomanKind volunteer advocates, hospital staff, and IPV victims were the target populations in this evaluation. It was found that the WomanKind program had a significant positive influence on the knowledge, attitudes, beliefs and behaviors of hospital staff. WomanKind training provided an understanding of the magnitude and scope of the IPV problem, increased health care providers' sensitivity, empathy, and willingness to screen patients for IPV, and prepared these providers for appropriate and timely intervention and referrals. This study provides strong evidence that specialized staff development training along with dedicated on-site client services has a positive impact on the knowledge, attitudes, beliefs and behaviors of health care providers interacting with IPV victims.

Purpose
The purpose of this study was to conduct an evaluation of the Minnesota-based WomanKind program to identify the extent to which this program influenced the quality of intervention provided by health care professionals to IPV victims. Specifically, the study assessed the program on four critical variables: (1) the extent to which health care providers reported increased capacity and motivation to screen and identify IPV victims; (2) reported confidence in their ability to assist IPV victims; (3) increased documentation in patient records of the physical and mental health consequences of violence; and (4) referrals to the on-site WomanKind program.

Background
Intimate partner violence (IPV) is a substantial public health problem for Americans that has serious consequences and costs for individuals, families, communities and society. Recent efforts have been made to increase resources to address gaps in knowledge and to improve services for victims, perpetrators and child witnesses.

In a study of emergency department visits by women, over half of all women in the study have experienced IPV at some time in their lives, while 11% of those with current husbands or boyfriends gave IPV as the reason for the visit. Non-lethal IPV results in financial losses to victims, conservatively estimated to be $150 million per year. Medical expenses accounted for at least 40% of these costs.

Preliminary research by CDC on the WomanKind program suggested that when IPV victims access the health care system, including emergency departments, they are rarely asked questions about the cause of their injuries, medical symptoms or any available support system. Findings indicated that, for the most part, IPV victims are simply treated for the medical problem and discharged. These same health care providers also became frustrated when the victim returned again and again for treatment of injuries or symptoms.

The WomanKind program began with the realization that the health care setting offers a unique opportunity for intervention with IPV victims. However, it was discovered that health care professionals may not respond appropriately to these situations for several reasons: (1) they have little or no training about IPV, (2) they are uncomfortable intervening with a victim, (3) they do not see such intervention as a part of their role or responsibility, (4) they have limited time to assess or assist the victim, and (5) they believe that their efforts ultimately will have little effect.

WomanKind is based on the premise that health care professionals intervene at a point where abuse and violence can be identified, support and education can be provided, and the victim can learn of options and community resources available. WomanKind is a hospital-based program that provides services to IPV victims in combination with education and training for health care providers. The WomanKind program consists of five full-time professional staff and a cadre of trained volunteer advocates, all of whom are available 24 hours per day, 7 days per week.

WomanKind applied the public health concept of early intervention and prevention in order to design services that would ultimately improve the health care response to IPV victims. Routine screening, identification, intervention, and appropriate referrals may result in prevention of more serious injuries, prevention of mental health/psychiatric symptoms, and prevention of abuse to children.

Methods
Three populations were under study for this evaluation: hospital staff, IPV victims (clients), and WomanKind volunteer advocates. The research team used a variety of methodologies to obtain an in-depth understanding of the WomanKind program. Although specific to each population, the research instruments were designed to measure similar information from each group. Five hospital sites were selected for the program evaluation. The WomanKind program was in place in three of the five hospitals, and the other two other hospitals were selected as comparison sites. Professional staff from three hospital departments participated: Emergency Departments (ED), Intensive Special Care Unit (ICU) and the Obstetric/Gynecology Unit (OB/GYN). Limited training by WomanKind staff was provided to interested staff at the comparison hospitals near the end of the study.

Surveys and interviews were the methods used to gather data from participants. Surveys were developed to measure knowledge, attitudes, beliefs and behaviors (KABB) of hospital staff, volunteer advocates, and IPV victims. Data were collected over a two-year period beginning January 1995 and ending March 1997. Baseline data were collected at the beginning of the study from all participating staff. Pretest and post-test surveys were administered prior to and following training conducted by WomanKind staff. Additionally, follow-up surveys were administered to all participating staff at specified intervals during the two-year assessment period.

To measure the importance of training on hospital staff knowledge, attitudes, beliefs and behaviors (KABB), a 51-item survey was administered to hospital staff. The scales that were developed measured: (1) self-efficacy for identification and interaction with IPV victims (2) self-efficacy for referral and services, (3) staff understanding of violent relationships, (4) staff role and responsibility to address IPV, (5) self-reported behaviors concerning screening and intervention, (6) staff preparation to assist IPV victims, and (7) beliefs in the importance of victim autonomy.

To assess curriculum materials used in training, all curriculum materials were reviewed, the curriculum developer and trainer were interviewed, and the training sessions were observed twice by the researchers. Training was provided consistently at the WomanKind hospitals over the two-year evaluation period. Approximately 400 hospital staff participated in 70 training sessions.

An important variable examined the perception that the health care providers held about the efficacy of the WomanKind program. The researcher conducted interviews with a sample of the participating staff at the five hospitals using open-ended questions.

A random sample of 2,531 emergency department records were reviewed to determine the extent to which hospital staff documented possible abuse in the medical record and offered victims referrals to WomanKind for services.

New WomanKind volunteer advocates received a month-long intensive training program and completed a 42-item version of the evaluation instrument.

To gather data on the clients' (IPV victims') perception of the WomanKind program's effectiveness, surveys were also administered at 3-month intervals to IPV victims who received WomanKind services over the course of the study. Participants were women who had acknowledged IPV and had been referred to the WomanKind program.

Findings
Results from the evaluation indicated that the WomanKind program had a positive effect on the knowledge, attitudes, beliefs and behaviors of both hospital staff and volunteer advocates in terms of their awareness of IPV as a problem, and in their understanding of the role of all health care providers in addressing this problem.

WomanKind training also proved effective in heightening the hospital staff's awareness of the extent to which IPV affects their patients, and the provider's vital role and responsibility in responding effectively to the needs of the IPV victim. In addition, the hospital staff reported heightened awareness in their understanding of the dynamics of IPV, their willingness and ability to identify patients who are IPV victims, and to offer referrals to the on-site WomanKind program. Hospital staff in the WomanKind hospitals reported increased knowledge and positive attitudes about the role they played in addressing IPV in contrast to staff in control hospitals, who reported little or no increase.

Total scores on the hospital staff surveys were significantly higher for the WomanKind hospitals than for the comparison hospitals at all time intervals during the study. In addition, staff at the WomanKind hospitals scored significantly higher than staff at the comparison hospitals on four of the scales: (1) self-efficacy for referral and services, (2) self-reported behaviors, (3) staff preparation, and (4) victim autonomy.

Trained hospital staff who had previous exposure to IPV (through education or personal experience) had significantly higher mean scale scores than those without this previous experience. Specifically, six scores were statistically significant: (1) self-efficacy for identification and interaction with victims of abuse, (2) self-efficacy for referral, (3) understanding of abusive relationships, (4) responsibility to address IPV, (5) self reported behaviors, and (6) staff preparation. These findings indicate that the WomanKind training is effective in helping staff develop confidence in their ability to recognize and communicate effectively with victims of domestic abuse.

During 10 months of the evaluation, 1,719 IPV victims were identified and referred to the WomanKind program, while only 27 IPV victims were referred to trained social workers at the comparison hospitals. Chart review results indicated that emergency staff at the intervention hospitals provided appropriate documentation of IPV in patient records twice as frequently as emergency staff at the comparison hospitals.

Findings indicated that training increased the WomanKind volunteer advocates' confidence in their ability to provide advocacy and support to IPV victims. Their knowledge and competence in making appropriate community referrals for IPV victims increased. Self-reports from volunteer advocates indicated that the training helped them understand the issue of IPV and its effects on the victim and family members.

Use of Results
This study underscores the efficacy of a well-structured, comprehensive, multi-disciplinary effort in the delivery of services to IPV victims. The results of this evaluation document that specific training on the dynamics of IPV, screening, identification, and intervention provide the knowledge and skills that enable health care providers to respond more appropriately to IPV victims. It also suggests that the WomanKind program may be useful as a model prototype for both inpatient and outpatient health care settings. This study provides strong evidence that specialized staff development training along with dedicated on-site client services has a positive impact on the knowledge, attitudes, beliefs and behaviors of health care providers interacting with IPV victims

AGENCY SPONSOR: Centers for Disease Control and Prevention, National Center for Injury Prevention and Control

FEDERAL CONTACT: Lynn Short, Ph.D.

PHONE NUMBER: 770-488-4285

PERFORMER ORGANIZATION: Macro International, Silver Spring, MD
 

Evaluation of Drug Use Review Demonstration Projects Final Report

Highlights
An external evaluation was conducted on drug use review (DUR) demonstration programs within the Medicaid agencies of two States: Washington and Iowa. The States of Georgia and Maryland were included in the study for experimental and comparison purposes. Specifically, the study evaluated the efforts of Project C.A.R.E., a joint project of Washington's Department of Social and Human Services and the University of Washington's School of Pharmacy. The Washington effort was designed to test the effectiveness of payments to pharmacists for the provision of cognitive services. The Iowa Medicaid online prospective drug use review (OPDUR) demonstration project was also evaluated and tested. Both evaluation efforts were designed to improve drug prescription methods by influencing pharmacists' behavior.

The findings from the evaluations of Project C.A.R.E. and the Iowa OPDUR indicate that prospective drug use review did not affect the frequency of drug problems. According to the study, expenditures on and frequencies in the use of prescription drugs and other medical services also were not measurably affected. Further, analysis of data collected from cognitive services (CS) provision also revealed no evidence of changes in the behavior of pharmacists who received OPDUR messages.

This research study found support for making no changes in DUR requirements. The analysis indicates a more effective use of Medicaid DUR funds would be to encourage more retrospective DUR, establish a way of compensating pharmacists for counseling and educating patients, and to support pharmacists by improving their capacity to prescribe.

Purpose
The purpose of this study was to test the effectiveness of the drug use review (DUR) demonstration projects in improving drug use and in reducing the negative consequences of drug misuse in the Medicaid programs of Washington and Iowa. If either of these State demonstrations proved effective, the evaluators were also expected to further study the costs of achieving these improvements compared to other policies and programs designed to improve drug use and to reduce the consequences of drug misuse.

Background
Since 1990, the Omnibus Budget Reconciliation Act has required all State Medicaid programs to implement drug use review (DUR). Also required were demonstrations of innovative models of DUR. Therefore, in 1992, the Health Care Financing Administration (HCFA) funded two experiments managed by two State Medicaid agencies: Project C.A.R.E. in the state of Washington, which tests the effects of paying pharmacists to provide cognitive services (CS); and the Iowa Medicaid OPDUR Demonstration Project, which tested online prospective drug use review (OPDUR). This is the final report of a 1993 HCFA-funded external evaluation of both demonstrations.

Methods
Two methodological tools were used for this evaluation study: The Penn State University (PSU) screener and a bibliographic database. The PSU screener is a knowledge-based research tool used for conducting epidemiologic and economic studies on potentially inappropriate drug therapy. It is capable of examining millions of drug claims records and is intended to be used with large pharmaceutical assistance and Medicaid programs. For this project, the screener was used to compute the occurrence of screen failures for a consistent set of DUR screening criteria across the two demonstration States, as well as the co-experimental and comparison States.

The DUR Outcomes Bibliographic Database was developed as a way of comprehensively and definitively linking DUR screening failures to expected clinical outcomes. The bibliographic review was then used in the selection and evaluation of candidate clinical outcomes.

To test the effects of Project C.A.R.E. on prescription drug use and costs, the evaluation team compared statistical reductions in drug cost and use of Medicaid recipients obtaining prescriptions from demonstration pharmacies against a control group of pharmacies. The same data set, comprised of geographic clusters, was used for the experimental and control groups. This involved random assignments of pharmacies. The study population was the same, with Medicaid recipients who had dual eligibility for Medicare. The sample population included 7,809 elderly subjects and 8,090 non-elderly subjects. Multiple regression models were used to test the study hypotheses.

To implement the Iowa demonstration, pharmacies had to meet a set of eligibility criteria and were recruited through newsletters, letters and articles in the Iowa Pharmacists Association Journal. All the pharmacies participating in the OPDUR demonstration were linked to an online DUR screener that reviewed all medical prescription drug claims as they were submitted electronically for payment. The pharmacies in the experimental group received feedback that identified potential prescription problems. The control group pharmacies received no messages. Although the pharmacies in both groups were told to document all cognitive services provided, they were not offered payment to do so. Iowa also adapted commercial screening software to local conditions by customizing the ProDUR systems, a commercially available online prospective DUR software. The project defined the syntax for modifications and developed software to test the syntax.

Findings
Eight years of drug claims for Medicaid programs were screened in Washington, Iowa, Georgia and Maryland. In the study of Washington's Project C.A.R.E., it was found that pharmacists and prescribers agreed on the benefits of increased communication between the two groups. Survey respondents and those who participated in focus groups supported patient counseling for healthier patients and more qualitative prescription methods. The physicians in the study believed that pharmacists could help them best by increasing narcotics monitoring and offering drug cost options. The pharmacists believed that physicians could best help them if they were allowed access to medical records or patients' diagnoses. The pharmacists also believed that they should be compensated for patient counseling.

Findings from Project C.A.R.E. demonstrate that CS payment is replicable in other States, that it is useful in providing a clear definition of what CS is, and that the provision of cognitive services to patients has no measurable impact on either drug use or cost. Project C.A.R.E. did not conduct a demonstration comparing OPDUR and cognitive services. Therefore, this study could not determine whether pharmacists had a preference for drug use review.

The Iowa study sought to determine if a system that instantly screened prescriptions for errors would improve pharmacists knowledge, increase their use of cognitive services, and improve optimal drug utilization, thereby decreasing sub-optimal drug use by Medicaid recipients. However, there was no evidence that OPDUR affected pharmacists' behavior. It was concluded from analysis of the Iowa OPDUR Demonstration and Project C.A.R.E. efforts that prospective DUR has no measurable effect on the frequency of drug problems, on how much is spent, how frequently prescriptions are used, or on clinical outcomes.

Use of Results
Since 1990, the Medicaid program has been mandated to operate prospective and retrospective drug use review programs. Now that most Medicaid patients (with the exception of the adult disabled and Medicaid/Medicare eligible elderly) will be folded into managed care operations, the question becomes whether policy makers should advocate for changes in DUR requirements based on current knowledge, fund additional research studies, or leave the system as it is.

The findings gained from this study indicate that a more effective use of Medicaid DUR funds would be to encourage more retrospective DUR, and to establish a way of compensating pharmacists for counseling and educating patients. The findings further indicate that OPDUR can continue to support pharmacists by improving their capacity to prescribe. This might be a more productive way to use public money instead of payments for generalized cognitive service provision, or standardizing and validating OPDUR screening systems.

This evaluation study also supports making no changes in the current system. There was no evidence found to support DUR policy changes that would be cost-effective for the Medicaid program or Medicaid recipients' sub-optimal drug use. There also was no evidence that OPDUR affected pharmacists' behavior. Further conclusions, from analysis of the Iowa OPDUR Demonstration and Project C.A.R.E. efforts, also indicate that prospective DUR has no measurable effect on the frequency of drug problems, how much is spent, how frequently prescriptions are used, or on clinical outcomes.

AGENCY SPONSOR: Health Care Financing Administration, Office of Strategic Planning

FEDERAL CONTACT: Jay P. Bae, Ph.D.

PHONE NUMBER: 410-786-6591

PERFORMER ORGANIZATION: Abt Associates, Cambridge, MA
 

Evaluation of the International Cooperative Biodiversity Groups (ICBG)

Highlights
The International Cooperative Biodiversity Groups (ICBG) are the first large scale, multi-country attempt to combine natural products drug discovery with measures to promote conservation of diverse biological species around the world. This study evaluated the ICBGs to determine their progress in achieving their goals and objectives. The findings from this study are to be used to assist ICBG sponsors in managing the program and to provide useful ideas on innovations and lessons learned from the individual programs.

The results indicate that each ICBG group made real accomplishments toward finding new drug lead compounds, advancing conservation techniques, and promoting sustainable economic development through their multi-disciplinary research and capacity-building activities. All ICBGs discovered novel bioactive compounds and developed systems to inventory and archive information gained on the biological diversity of their respective source countries. Also significant was that all ICBGs provided training in biodiversity conservation, drug discovery and drug development in their source country. The results from this evaluation study will provide a useful model and significantly contribute to scientific capacity building in future biodiversity programs in other countries.

Purpose
The purpose of this study was to provide a comprehensive evaluation of the ICBG program to assess progress toward achieving individual program goals and objectives (drug discovery, biodiversity conservation, and sustainable economic development). The evaluation findings are to be used to assist ICBG sponsors in managing the program and to provide useful ideas on innovations and lessons learned from the individual programs.

Background
The ecological base for sustainable human survival is contingent upon maintaining and ensuring the access of populations to resources to meet their needs, now and for future generations. There is an urgent need to protect a deteriorating global environment that provides for basic human needs while at the same time promoting economic well-being. This is especially true in both developed and developing countries where natural resources have been depleted.

Over the past two centuries technological developments have provided humans with the ability to expand the transformation of natural resources into the large scale production of goods. The world has reached a critical point in this process. In developing countries, natural resources have been severely depleted by human impacts, such as forest loss through unsustainable logging, agriculture, ranching and overgrazing. In developing countries, dwindling reserves are vulnerable because conservation awareness and legislation are often weak or non-existent.

The ICBG program was conceived as one approach to contribute toward the potential resolution of these problems. The ICBGs addressed developmental issues of importance to both the United States and the international community. Each ICBG accomplishes its work through a unique multi-national and multi-disciplinary partnership. The ICBG model provides working tools for responsible resource development and hopefully will be the catalyst for larger sustainable efforts throughout the world. The ICBG program, through each individual group, also supports research, training, technology transfer, and scientific infrastructure development.

Methods
An Evaluation Advisory Group was established for the study with membership being drawn from the scientific staff of each ICBG and each funding agency, five source countries, and outside experts. The task of this group was to develop the critical variables to be tested and to generate methods through which these variables might be assessed. After the specific variables had been identified, collection instruments were designed to collect data in four phases: (1) a pre-site visit, (2) archival data collection, (3) site visit interviews, and (4) post-site visit interviews. Because of the large amount of data to be collected, four instrument components were developed and administered over the remaining year of the current grant cycle.

After design of this methodological structure, a contract was awarded to the Center for Public Health Research and Evaluation of the Battelle Corporation for a specific approach that accomplished the following: (1) accommodated the varied and non-standard implementation of the ICBGs, (2) obtained sufficiently broad coverage of respondents, (3) minimized the burden on ICBG researchers and other respondents, and (4) incorporated cost and time efficiencies.

Contractor staff made visits to three selected sites in Chile, Peru, and Suriname. Prior to the site visits, data were collected on the organizational and programmatic (scientific) structure of the ICBG's potential site visit respondents. Additionally during this phase, Group Leaders completed a self-administered questionnaire. During Phase 2 of the data collection, two sets of instruments were used to gather data. The various activities in which the ICBGs had been engaged were collected and evaluated. A second self-administered questionnaire was again completed by the Group Leader. During the actual site visits to the three countries, interviews were conducted with program leaders and indigenous people who had been involved with the programs. The post-visit data were collected through telephone calls to the various ICBGs.

Findings
Results show that each ICBG group demonstrated significant movement toward accomplishment of the program's strategic objectives: to protect human health, advance the conservation of biologically diverse ecosystems, and promote sustainable economic development through the search for drugs to control diseases of concern to both developed and developing countries.

There were significant strides in the discovery of new drug leads. While no new drugs were discovered, substantial efforts by the ICBGs were made in the four areas. The ICBGs all accomplished the following:

• Development of contractual agreements with source country organizations. It was recognized that a consensus-building process must occur before the initiation of sample collections and the establishment of the intellectual property rights. Each ICBG concluded its own set of novel agreements to govern the collaborations.
• Collection and inventory of its activities. Each ICBG was able to accomplish somewhat less collecting than expected. However, over 3,000 species had been collected during the first four years. The ICBGs also developed new approaches to sample collection and testing and improving methods.
• Engagement of extraction activities. The ICBGs combined report producing over 6,000 extracts from samples collected and submitted these for testing in at least 60 different assays in15 different therapeutic areas.

The ICBGs facilitated sustainable economic systems by developing local capacity, scientific infrastructure, and community-based enterprises. All ICBGs carried out some level of training to increase the source country human capacity in drug discovery, and in biodiversity conservation. Two of the ICBGs have contributed toward building renovations in the source countries. Development of micro enterprise initiatives with local communities was initiated by two ICBGs.

Use of Evaluation Results
The ICBG Program was established as a unique effort to coordinate scientific, cultural, and political forces in providing new information on plant and animal species, the possibility of the development of new drugs from this diverse flora and fauna, the initiation of conservation efforts through education and understanding (including in-country legislation), and development of methods to move the collection and biodiversity conservation efforts to being self-sustaining.

This evaluation provides:

• benchmarks for future biodiversity collection and conservation programs,
• advances in generating and evaluating the types of data necessary for an understandingofbiodiversity-type program impact,
• methods that allow for efficient and targeted collection of information for future projects,
• information for future scientific capacity building of biodiversity programs in some countries,
• knowledge and expertise for designing in-country agreements that are equitable to a diverse set of parties with vastly differing priorities, and
• a useful model for operating new initiatives and for obtaining data that can be used to justify increased funding.

FEDERAL CONTACT: Kirby J. Weldon

PHONE NUMBER: 301-496-2571

PERFORMER ORGANIZATION: Battelle Corporation, Arlington, VA
 

Services Research Outcomes Study (SROS)

Highlights
The Services Research Outcomes Study (SROS) was initiated at the request of the Office of National Drug Control Policy (ONDCP) in 1990 and was to be the first national drug abuse treatment outcome study based on a nationally representative sample of treatment providers. Earlier outcome studies - all showing positive outcomes from treatment - had used samples based largely on urban treatment providers. It was thought this sample bias would exaggerate positive treatment outcomes. The SROS confirmed these earlier findings of positive treatment outcomes and dispelled the notion that sample bias accounted for positive results. The SROS principal finding was as follows:

A nationally representative survey of 1,799 persons confirms that both drug use and criminal behavior are reduced following inpatient, outpatient and residential treatment for drug abuse.

Because use of every substance decreased nationally in the five years after treatment, switching from one substance to another after treatment cannot account for the positive results.

The one exception to the overall decrease in drug use following treatment was for those who were adolescent when discharged from treatment. Following treatment, adolescents increased their use of alcohol by 13 percent and the use of crack by 202 percent, albeit from a low pre-treatment base of five percent. Specific reasons for the difficulties in treating adolescents remain unclear. Consequently, this treatment subgroup poses an ongoing challenge for addiction researchers and those who work with adolescent substance abusers.

Purpose
To conduct a drug abuse treatment outcome study using a nationally representative sample, and to update earlier findings from ten and twenty years ago.

Background
The Services Research Outcomes Study (SROS) was initiated in the National Institute on Drug Abuse at the request of the Office of National Drug Control Policy (ONDCP) in 1990 and moved to the Office of Applied Studies with the creation of SAMHSA in 1992. SROS was to be the first national drug abuse treatment outcome study based on a nationally representative sample of treatment providers. Earlier outcome studies such as DARP, TOPS, and the more recent DATOS are based on samples in which urban treatment providers predominate. It was thought that this urban sample could exaggerate positive treatment outcomes by overemphasizing the older and better-funded programs. SROS was designed to test this assumption by using a random national sample of treatment programs. SROS was also intended as an update of drug abuse treatment outcome findings to provide a periodic check on national treatment effectiveness.

Methods
These positive findings were determined through a survey of 1,799 (71.4 percent male and 28.6 percent female) persons discharged from treatment in 1989-1990. Lost through death were 277 potential respondents. Out of an eligible 2,756 respondents, 1,799 were interviewed for a survey capture rate of 65 percent, which is the expected rate for drug abuse surveys. Substance abuse records for each of the clients were provided by a nationwide sample of 99 drug treatment facilities. All 1,799 clients were fully informed of the purpose of the survey and gave their informed consent to be interviewed five years following discharge from drug abuse treatment. By weighting up to national levels, the respondents translate to 976,012 individuals discharged from treatment in 1990. SROS asked respondents to participate in a urine test of recent drug use and 76 percent agreed. The urine test results agreed with self-reported 'drug use in the last week' from 98-90 percent, depending on the drug. Urine tests agreed with self-reported alcohol use by 64 percent. The urine test is not the best measure of alcohol use, however, making it difficult to interpret these results for alcohol.

Findings
The SROS clearly demonstrates an overall national drop in the use of illicit substances five years after treatment episode. Reported use of any illicit substance dropped by 21 percent five years after treatment, which is an increase in abstinence from all illicit drugs covered by the survey.

Besides the overall increase in abstinence, each substance also showed increased abstinence, meaning that the surveyed sample was not switching from one substance to another but decreasing overall drug use. For instance, any use of alcohol decreased by 14 percent, any marijuana by 28 percent, any cocaine by 45 percent, any crack by 17 percent, and any heroin by 14 percent.

Treatment had positive outcomes for women, men, and all age groups except adolescents. Adolescents treated in 1989-90 showed a 13 percent increase in alcohol abuse and a 202 percent increase in crack use five years following treatment. Adolescent employment, however, increased dramatically. These findings describe the known tendency for adolescents to experiment unwisely, but treatment for the group must be improved to stop substance use quickly before it destroys a young life. Programs of improvement for adolescent treatment are underway at SAMHSA.

Survey results confirm those of previous studies showing that treatment for substance abuse can significantly reduce crime. Most criminal activity, including breaking and entering, drug sales, prostitution, driving under the influence and weapons use declined by between 23 and 38 percent after drug treatment. As one would expect, older age groups were more likely to reduce their post-treatment criminal activities than were younger groups.

Not only crime, but violence against oneself and other declined, specifically involvement in physical abuse and suicide attempts declined in the five years following treatment.

The positive counterpart of reductions in crime and violence was a noticeable shift toward regaining and retaining child custody after drug abuse treatment. Family stability was further enhanced by reports of more reliable housing obtained following treatment.

In locating respondents for the survey, a higher than average death rate was observed in this group, compared to the U.S. population. Due to the small number of observations, reliable estimates are not possible, but it was striking to note that white males discharged from treatment had roughly eight times as many deaths as expected (108 deaths, rather than the expected 13). White females discharged from treatment had nearly 18 times as many deaths as expected (35 deaths, rather than the expected two). Black males discharged from treatment had about five times as many deaths as expected (67 deaths, rather than the expected 13). Black females discharged from treatment had seven times as many deaths as expected (14 deaths, rather than the expected two).

Use of Results
Because SROS is based on a nationally representative sample of treatment providers, the findings describe drug abuse treatment in the U.S. as a whole This makes the study suitable to support national drug control and treatment policy. For example, knowing that treatment reduces the number of drug users nationally provides a rationale for expanding and improving treatment to reduce demand for illicit drugs and thus to shrink the illegal markets, at least in the U.S. Every drug treatment outcome study (DARP, TOPS, DATOS) has shown treatment reduces drug use, but until these findings were confirmed in a nationally representative sample, the findings were criticized as biased toward the larger urban and perhaps most effective treatment programs. SROS confirms that the consistently positive finding that drug abuse treatment reduces national drug use is not the result of sample bias. Further support for policy decision-makers will be provided by a replication of the SROS, the Alcohol and Drug Services Study (ADSS), now underway in the Office of Applied Studies, SAMHSA. The methods are those used for SROS with some additional refinements and improvements.

Just as important to policy as the overall positive results shown in SROS are the weaknesses found in the national drug treatment system. In 1989-1990, treatment was not effective for the majority of participating adolescents. While this may be understandable given the inexperience and experimentation known to characterize adolescents, treatment improvement for this group is clearly indicated. Efforts are now underway at SAMHSA to improve treatment for adolescents.

Finally, substance abuse is known as a relapsing disorder, and new studies that look at repeated treatments over time (longitudinal studies) may begin to tell us how many treatment episodes by which groups should be expected on the road to full recovery.

AGENCY SPONSOR: Substance Abuse and Mental Health Services Administration

FEDERAL CONTACT: Barbara A. Ray, Ph.D.

PHONE NUMBER: 301-443-0747

PERFORMER ORGANIZATION: National Opinion Research Center (NORC), Chicago, IL
 

B. PERFORMANCE MEASUREMENT

Enabling Performance Measurement Activities in the States and Communities

Highlights
This study identified existing and potential barriers to the implementation of performance measurement activities in the public health arena. To conduct the research, the project team combined a literature review with structured interviews in city, county, and regional health jurisdictions in Illinois, Oregon, and Washington. A range of perspectives and experiences were sought from private sector health providers and Federal agencies and programs, as well as from local public health agencies. The findings from the literature review were in accord with the information obtained through the structured interviews. That is, barriers do exist in implementing performance activities, and they are consistent across all health settings and public programs. As a result, this study enabled the research team to identify a set of common barriers and to offer seven recommendations to the Department of Health and Human Services (HHS) on how to overcome these barriers. Several aspects of the findings can be linked to the collaborative ongoing effort by the Robert Wood Johnson Foundation and the W.K. Kellogg Foundation's project, "Turning Point: Collaborating for a New Century in Public Health." This ongoing study is based in 14 States and 41 communities, and seeks to improve the infrastructure of health programs by developing effective performance measurement systems in States and local public health jurisdictions. The project team for this study intends to disseminate the findings from this study to the Turning Point project.

Purpose
At the heart of the controversy surrounding performance measurement, including why it works and what it takes to make it work, is a lack of understanding and fear of the process. The central aim of this study is to provide a clear understanding of performance measurement by delineating some common barriers to implementation, recommending strategies to overcome these barriers and evaluating models that can be used to implement these strategies.

Background
Over the past ten years, the HHS has committed to assisting State and local public health agencies in developing ways to improve and promote health. To assess their work, these agencies have been urged to transition from a process of counting resources used and services provided, to a method that measures and accounts for the effectiveness of these activities. Many of these agencies have done so, but in the process have met with internal and external barriers that fall into the following three categories: (1) designing an efficient performance measurement system, (2) gathering the appropriate data needed to inform such a system, and (3) reporting reliable performance measurement results. The HHS selected the Northwest Prevention Effectiveness Center and the Health Policy Analysis Program at the University of Washington's School of Public Health and Community Medicine to look for means by which the HHS could assist its components and partner agencies move toward results-oriented management. The identification of barriers and suggestions for strategies to overcome these barriers were important aspects of the study. Another important aspect was the identification of barriers that are unique to the public health field.

Methods
Two methods were used to implement this study: a review of the literature and structured interviews. The literature search included electronic database searches and searches of a broad range of published print materials from the public and private health sectors. Also included was a review of government and business literature from non-health related organizations. The literature review was followed by key informant interviews conducted with public health and academic leaders in Illinois, Oregon and Washington. These States were selected because they have developed measures and processes for assessing the performance of their public health systems. A semi-structured interview protocol was first developed and then used with the key informants to obtain specific information about barriers to implementing performance activities. Interviewees included State department directors, upper and middle-level managers, line staff and directors, and managers within associated organizations. Analysis and summary of the reviewed literature significantly contributes to the body of knowledge about performance measurement. This analysis and summary, combined with the one-on-one interviews, allowed the project team to isolate a set of 12 common barriers to performance measurement implementation and to provide the HHS with seven strategies that could be used to overcome these barriers.

Findings
The literature review consistently supported the research team's hypothesis that barriers to performance measurement and strategies to overcome them have no relation to setting. In looking at public and private programs, upper, line and lower level managers all reported some common barriers to performance measurement. Overall, the dominant barrier to performance measurement, as discovered in the literature review and from key informant interviews, was the negative perception of the process. Many could not see the value of the process and how or whether it could enhance their work. The project team viewed leadership support as critical to successful implementation of performance measurement and management systems, and found the following key techniques for communicating the value and utility of performance measurement in an organization: (1) committing adequate resources to assist staff in performance measurement activities, (2) training and involving managers as a form of encouragement, and (3) creating and using positive incentives.

Key informant interviews revealed barriers that consisted of: (1) fear that performance measurement activities would be used to judge performance, (2) fear that a program's funding would be cut, and (3) the fear of losing control over a program.

The team offered seven recommendations to facilitate performance measurement activity in State and local public health jurisdictions: (1) develop clear ideas and goals for performance measurement, (2) develop standard performance measurement terminology, (3) identify major aspects of performance measurement systems as well as a way that State and local health agencies can use them to meet their needs, (4) disseminate performance measurement tools and train others to use them, (5) develop collaboration for training and technical assistance in staff development, and (6) offer financial incentives to agencies to encourage participation in performance measurement activities.

Use of Results
Although many commonalities were identified as barriers to implementing performance measurement in the public and private health-related sectors, gaps continue to exist in the knowledge base. For example, this study was not able to note with any specificity, the particular barriers by health field. The literature provided sparse information about specific health specialities and the key informant interviews suggested the need for further analysis of barriers to performance measurement in the areas of mental health and environmental health.

The Turning Point project relates to the findings from this study in that it too suggests reshaping local and State health systems by: (1) involving key players, (2) strengthening the relationship between clinical health care and public health systems, and (3) stressing the need for more collaboration between local and State agencies in the planning and implementation of an improved public health infrastructure. At the heart of the activities should be the development of effective performance measurement systems. The findings strongly suggest that this study and the activities of the Turning Point project should be integrated.

AGENCY SPONSOR: Office of Public Health Services, Office of Disease Prevention and Health Promotion

FEDERAL CONTACT: Linda Bailey

PHONE NUMBER: 202-205-4872

PERFORMER ORGANIZATION: University of Washington, School of Public Health and Community Medicine, Seattle, WA
 

C. ENVIRONMENTAL ASSESSMENT

The Role of Home and Community-Based Services in Meeting the Health Care Needs of People with HIV/AIDS

Highlights
In the early 1980s, when AIDS first appeared, it was an unfailingly acute and fatal disease. Although the disease remains fatal, advances in AIDS-specific medical expertise and treatment have increased life expectancy for people with HIV and AIDS. As a result, AIDS treatment has shifted from an acute- to a chronic-care model. These changes have broadened the need for different types of home- and community-based services to help people with AIDS lead longer and fuller lives. Services such as assistance with daily living activities and the provision of home-delivered meals have long been an integral part of AIDS care. Because of improved health and functioning, however, people with AIDS now need help with activities such as adhering to complex treatment regimens, returning to work, and caring for families.

In identifying the challenges health care providers, planners, and policymakers face in dealing with the changing epidemic, the study noted a need for: (1) better information about service use and costs to deal with an environment increasingly dominated by cost control, (2) concrete strategies for implementing managed care for people with AIDS, and (3) a cohesive policy that addresses the health care needs of people with all types of chronic illnesses.

Purpose
The purpose of this project was to identify the policy implications for a changing AIDS population, and to set the groundwork for studying the current status and future of home- and community-based service use among people with AIDS. The project examined current service delivery environments to identify problems and assess where the gaps are or where they may be in the future.

Background
In the early days of the epidemic, the typical person with AIDS was a white man who had contracted HIV through sexual contact with another man. However, the epidemic has increasingly and disproportionately affected women and people from racial or ethnic minority groups. More and more, the mode of transmission for the disease has been injection drug use. Meanwhile, improved medical care and pharmaceutical treatment have extended the lives and improved the health of many people with AIDS, leading in1996 to the first decline in deaths since the start of the epidemic.

Changes in AIDS treatment and in the characteristics of the AIDS population have had profound and interrelated effects on the use of home- and community-based services by people with AIDS. Longer life expectancies mean that people use needed services for a longer time. Enhanced treatment has also improved health and decreased levels of functional impairment for many people, which in turn has led to a decrease in their use of such traditional home-and community-based services as home-delivered meals and personal care. At the same time, better treatment has boosted the need for other types of support, such as assistance with adhering to complex treatment plans and returning to work. Meanwhile, the increased incidence of AIDS among people with low incomes, people with substance abuse problems, and women and families has amplified the need for greater interactions between home- and community-based service providers and substance abuse treatment, mental health, family services, and public assistance systems. Medicaid, Medicare, and the Ryan White Comprehensive AIDS Resources Emergency Act have been the major public funding sources for HIV/AIDS care during the 1990s. Although 1995 Medicaid spending for AIDS care was only about two percent of total Medicaid spending, the spread of AIDS among low-income people has placed a growing burden on both the Medicaid and Ryan White programs, most recently to fund costly protease combination therapy. As the epidemic changes, these programs must also reconsider their eligibility and service coverage criteria, to reduce disincentives to work and increase flexibility in meeting chronic care needs, which typically vary in intensity and type over time.

Public programs have sought ways to increase access to home care for beneficiaries with chronic conditions that put them at risk of institutionalization. For example, Medicaid programs have used Home- and Community-Based Service waivers allowed under Section 1915© of the Social Security Act. The recent trend among Medicaid programs to rein in escalating costs by enrolling beneficiaries in managed care plans has had, to date, only a modest effect on people with AIDS. Many states exclude individuals with disabilities or chronic illnesses--like AIDS--from managed care. In addition, although Medicaid covers many of the home- and community-based services that people with AIDS need, most Medicaid managed care plans exclude these services from capitation arrangements. As a result, little is known about how best to provide the full range of AIDS-related services in a managed care environment. The spread of Medicaid managed care also raises questions about whether and how to integrate services currently provided with Ryan White funds for Medicaid beneficiaries who enter managed care.

Methods
This study involved three components, including: (1) a review of home and community-based services literature with a particular focus on financing and service delivery of care to persons with AIDS, (2) case studies of six programs that deliver home and community-based care to persons with HIV/AIDS in New York and Los Angeles, and (3) an examination of the use and cost of Medicaid home and community-based services for participants in New Jersey Medicaid and New Jersey's home and community-based Medicaid waiver program.

The project developed case studies to describe current provider approaches to delivering home- and community-based services to people with AIDS. The case studies were based on in-person discussions with staff at six large and well-established service providers in Los Angeles and New York City and were supplemented by telephone conversations with state Medicaid and Ryan White CARE Act representatives. Criteria for selection included history, size, financing, service delivery system, and primary population served, among others. In Los Angeles, the case studies examined AIDS Project LA, the second largest AIDS service organization in the US; the AIDS Health Care Foundation, which operates a Medicaid managed care system for persons with AIDS; and the Altamed Health Services Corporation- a community health center that targets the Latino community. In New York, case studies examined the Gay Men's Health Crisis, the oldest and largest AIDS service provider in New York; the Visiting Nurse Services of New York-a large, for-profit home health agency; and Village Center for Care, which provides AIDS-specific home care, day treatment, case management and in-home nursing care.

The study also included a secondary data analysis of the use and reimbursement patterns among AIDS patients in the New Jersey Medicaid Waiver program. New Jersey was selected because it closely mirrors the demographics of the nation's AIDS population, i.e. one-fourth of the population is female, two-thirds are non-white, and half are injection drug users. New Jersey also emphasizes home-based care and developed the nation's first home- and community-based service waiver for people with AIDS. In addition, the State supports the development of a longitudinal research database which links Medicaid claims with AIDS registry data. The initial sample selected for this study included 2,464 people who became Medicaid-eligible between 1989 and 1991 and were diagnosed with AIDS in 1992. Of this population, complete data were available for 1,293 persons, which formed the sub-sample population for this study. Thirty-three percent of the 1,293 participated in the waiver program known as the AIDS Community Care Alternatives Program (ACCAP), while the majority, consisting of more women, blacks, injection drug users, and people who lived close to New York City, were non-waiver participants.

Findings
The literature points to the increasing incidence of AIDS among people who must rely on multiple public programs for medical care and support services, and the growth of managed care in the public sector as serious challenges to planners who must decide how to finance and deliver health-related services for people with AIDS. Advances in AIDS treatment (i.e., combination drug therapy) that are costly and difficult to adhere to under the best living conditions compound these challenges.

The case studies spotlighted the need for providers to adapt the types of services they offer and their service delivery approaches in response to growing numbers of disadvantaged clients who are living longer, healthier lives as a result of improved AIDS treatment. Provider response to increasing numbers of multi-problem clients has included broadening the range of services they provide in-house, increasing referrals to and interactions with providers in other systems (mental health, substance abuse treatment, housing, and public assistance), reconfiguring staffing to include more trained professionals and fewer lay staff and volunteers, and developing procedures to identify clients with the most complex problems for the most intense services. While very few providers in this study had direct experience with managed care, they see it as inevitable and are concerned that many questions about managed care for persons with AIDS have not yet been answered.

An additional part of this study compared home care use and costs for participants in New Jersey's AIDS waiver program with those for Medicaid beneficiaries with AIDS who received home care under regular Medicaid between 1988 and 1996. The analysis suggested that the waiver program's approach, which focused on case management, may have reduced existing disparities in home care use between beneficiaries from different racial/ethnic and transmission groups. For example, for beneficiaries receiving regular Medicaid services, there were statistically significant differences between blacks and whites and between injection drug users and nonusers. These differences did not exist for participants in the waiver program. The findings suggest that case-managed home care may be an important tool for increasing access to care in an increasingly diverse AIDS population.

Use of Results
This study suggests that as AIDS becomes a disease of the disadvantaged, medical treatment and health-related support services begin to blend with traditional public assistance programs, such as food stamps and housing assistance. Also, as AIDS increasingly becomes a chronic, rather than an acute and fatal disease, its management has come to resemble more closely that of other serious chronic conditions. This study suggests key policy challenges (and areas for future research) including the development of cost-effective models of chronic disease management that include figuring out ways people can take responsibility for their own health (adhere to treatment regimens, maintain good self-care practices, etc.) and how to provide them with the assistance and financial support they need to take this responsibility. Substance abuse treatment, mental health services, assisted or supported living, assistance with returning to work, and help locating housing all play a bigger role in the delivery of home and community-based services for newer AIDS populations than they did in earlier days of the epidemic.

AGENCY SPONSOR: Office of the Secretary, Office of the Assistant Secretary for Planning and Evaluation

FEDERAL CONTACT: Gavin Kennedy

PHONE NUMBER: 202-690-6443

PERFORMER ORGANIZATION: Mathematica Policy Research Inc., Plainsboro, NJ
 

Exploratory Study of Health Care Coverage and the Employment of People with Disabilities

Highlights
This study, commissioned by the Office of Disability, Aging and Long-Term Care Policy (DALTCP) within the Office of the Assistant Secretary for Planning and Evaluation (ASPE), reviewed existing research and examined new data to gain greater understanding of the relationships between access to health care, employment, and public program participation for persons with disabilities. Major sources of data include the 1993 Survey of Income and Program Participation (SIPP), the 1994 National Health Interview Survey, and administrative data from the Social Security Administration.

The evidence accumulated in this exploratory study supports the contention that the potential lack of adequate health care coverage prevents some people with disabilities from working or working as much as they would like. Highlights of the study include the following:

• Health care costs for people with disabilities are generally much higher than for those without disabilities. On average, total health expenditures for non-elderly people with disabilities are about six times greater than expenditures of their non-disabled counterparts, and out-of-pocket expenditures are three times greater. One study finds that persons with disabilities are significantly more likely to experience catastrophic out-of-pocket expenditures than persons without disabilities.
• The eligibility requirements for Medicare and Medicaid create financial incentives that discourage or encourage work, depending on the current status of the individual. For people with disabilities, qualification for Medicare and Medicaid is primarily contingent on participation in the Social Security Disability Insurance (SSDI) and Supplemental Security Income Insurance (SSI) programs, which require that individuals not engage in substantial work. At the same time, these programs include work incentive programs.
• Health care coverage has substantial effects on the employment or program participation of other groups--single mothers, older workers, and the elderly. A number of studies find convincing evidence of a relationship between access to health care coverage and work and program participation decisions.
• The empirical analysis of SSA administrative data yields strong evidence that some SSI recipients who work substantially restrain their earnings in order to stay below the SSI 1619 (b) income threshold, an amount above which Medicaid benefits are no longer available.

Evidence is clear that persons with disabilities cite the fear of loss of medical benefits and other services provided under Medicaid and Medicare, such as personal care services, employment support services, case management and long-term care services, as significant barriers to employment. Despite the need to effectively change public health care coverage to more appropriately meet the long-term care needs of persons with disabilities, there is no agreement on exactly what should be done, and little knowledge of how health and long-term care coverage work in concert with other supports.

Methods
The study reviewed the relevant literature on health care coverage, employment, and public program participation related specifically to persons with disabilities. In addition, researchers assessed the impact of increases in the earnings limit established under Section 1619 (b) of the Social Security Act on earnings among SSI recipients participating in 1619 (b). The SSI program provides income benefits to poor persons with disabilities. Participation in SSI also entitles a person with disabilities to health care benefits under Medicaid. Under 1619 (b) provisions, SSI recipients may have "chargeable income" (income after certain reductions) including earned income, and retain Medicaid coverage even though earnings are too high to qualify for SSI cash benefits.

The earnings limit (referred to as the "1619 (b) threshold") is based on average annual Medicaid expenditures for disabled people in each State, and thus varies from State to State and from year to year. Researchers examined SSA administrative data for the 4.1 percent of adult SSI recipients under age 50 who had earnings in 1990 (n=121,913). Researchers developed hypotheses based on the prediction that if some SSI recipients restrain earnings and employment to stay below the 1619 (b) limit, earnings of recipients should rise as the threshold rises. Four study groups and one control group were identified. To test prediction within and between groups, means were compared and the relationship between changes in the earnings threshold and changes in earnings for SSI recipients were examined. Multiple regression analysis was used to examine the changes in four variables--annual Social Security earnings, annual SSI payment, social security employment, and SSI participation. The first series examined data generated for 1990-1991. The series was then repeated for the 1990-1996 cohort.

Data from the 1993 Survey of Income and Program Participation (SIPP) and the 1994 National Health Interview Survey (NHIS) on employment and health care coverage were also examined to assess the relationship between employment, health insurance, and program participation for persons with disabilities.

Findings
The findings from the study indicate that some SSI recipients who are employed and have incomes close to the 1619 (b) threshold restrain their Social Security earnings in order to stay below the limit and remain eligible for medical benefits under Medicaid. It appears that recipients make marginal adjustments to their earnings as a result of threshold and unearned income changes, and not wholesale changes to their participation or employment status.

The analysis of the SIPP and NHIS survey data focus on characteristics of people with and without disabilities and characteristics of disability program participants and non-participants. The following are among the general findings from the surveys:

• In general, across all categories of employment and health insurance status, persons with disabilities are older and less educated than persons without disabilities. Persons with disabilities are less likely to be high school or college graduates.
• Persons with disabilities are more likely to be living in poverty and less likely to have incomes in excess of 300 percent above the poverty line.
• Persons with disabilities who have health insurance are less likely to rely on private health insurance than those without disabilities; many persons with disabilities rely on Medicare and Medicaid.
• Among the employed populations, people with disabilities are more likely to be self-employed than the non-disabled population, though rates of part-time employment are similar for the two groups.
• Disability program participants are more likely to have severe disabilities compared to non-participants with disabilities. They are also more likely to have difficulty with activities of daily living and are more likely to have 3 or more activities of daily living (ADL) difficulties.
• Program participants who are employed have a much higher rate of part-time employment than do employed non-participants.

• Health care costs for people with disabilities are generally much higher than for those without disabilities. On average, total health expenditures for non-elderly people with disabilities are about six times greater than expenditures for their non-disabled counterparts, and out-of-pocket expenditures are three times greater. One study finds that persons with disabilities are significantly more likely to experience catastrophic out-of-pocket expenditures than persons without disabilities.
• The eligibility requirements for Medicare and Medicaid create financial incentives that discourage or encourage work, depending on the current status of the individual. For people with disabilities, qualification for Medicare and Medicaid is primarily contingent on participation in the Social Security Disability Insurance (SSDI) and Supplemental Security Income Insurance (SSI) programs, which require that individuals not engage in substantial work, thereby creating a strong work disincentive.
• Health care coverage has substantial effects on the employment or program participation of other groups--single mothers, older workers, and the elderly. A number of studies find convincing evidence of a relationship between access to health care coverage and work and program participation decisions.

The 1619 (b) analyses performed for this report provide some interesting insights about the dynamic use of that program and, more generally, the dynamics of employment, earnings, and program participation of disabled adult SSI recipients. A clearer picture of the use of the 1619 (b) program could be obtained by following SSI award cohorts through their entire SSI experience. Another fruitful avenue of approach would be to analyze survey data matched to Social Security administrative data to learn more about events and conditions that precipitate program participation, and persons with significant disabilities who maintain employment. Also, new studies need to collect qualitative data from people with disabilities concerning their views on barriers to employment.

AGENCY SPONSOR: Office of the Secretary, Office of the Assistant Secretary for Planning and Evaluation

FEDERAL CONTACT: Kathleen Bond

PHONE NUMBER: 202-690-6443

PERFORMER ORGANIZATION: The Lewin Group, Fairfax, VA

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