Office of Disability, Aging and Long-Term Care Policy (DALTCP) RESEARCH PROJECTS

This section describes ongoing DALTCP-funded research, as well as research completed within the past five years. Reports produced through these projects are listed, including links to the Abstract, Executive Summary and/or Full Report (if available online).

Remember, the Site Index section includes an alphabetic list of keywords you can choose to find information that is referenced throughout the DALTCP website.

A

ANALYSES OF 1999 NLTCS/ICS CAREGIVING DATA

PURPOSE: The purpose of this project is to conduct data analyses using the 1999 National Long-Term Care Survey Informal Caregivers Supplement (NLTCS/ICS). The data analyses will be used to revise and update the 1998 ASPE/AoA publication "Informal Caregiving: Compassion in Action." A technical advisory group will be created to help guide the work and will consist of noted researchers on caregiving who are familiar with the NLTCS/ICS (e.g., Richard Schultz of the University of Pittsburgh) and representatives of organizations whose members may be among the target audience for the revised report (e.g., National Association of State Units on Aging, AARP, National Family Caregivers Alliance).

ANALYSES OF CHANGES IN ELDERLY DISABILITY RATES: IMPLICATIONS FOR HEALTH CARE UTILIZATION AND COSTS

PURPOSE: The purpose of this project is to conduct analyses using the 1984-1999 National Long-Term Care Survey (NLTCS) and the Medicare Current Beneficiary Survey (MCBS) to understand the nature of recent declines in elderly disability rates and their implications for health care utilization and costs. Specifically, researchers at The Urban Institute are (1) decomposing changes in elderly disability rates using the 1984 to 1999 NLTCS and exploring possible reasons for the decline, and (2) linking changes in elderly disability rates to the use of specific medical procedures (e.g., cataract surgery, coronary and joint replacement surgeries) and/or assistive technology. The MCBS is the primary data set for the latter analyses.

Understanding the structure of the decline will give us our first clues as to the reasons for the overall decline, the likelihood that disability rates will continue to fall in the future, and its potential impact on health care spending. Current hypotheses for the decline include improvements in nutrition (including advances in food preparation and storage over the century), healthier life-styles (higher levels of physical activity, lower levels of drinking and smoking), better treatment of chronic diseases through medical procedures and pharmaceuticals, and use of assistive devices and technology. It is likely that future improvements in disability and changes in health care utilization and spending will be heavily dependent on which of these hypotheses is correct. For example, if declines in disability rates are due primarily to improvements in instrumental activities of daily living (IADLs) or equipment use and reflect environmental changes rather than improvements in the intrinsic health of the elderly population, then the declines observed over the last decade may not continue into the next century and may have limited impact on acute health care spending. This project is a first step in understanding the policy implications of the changes that we are observing in elderly disability rates.

ANALYSES OF RESIDENTIAL TRANSITION OF OLDER AMERICANS

PURPOSE: There are four main questions to be addressed in this project: (1) How do characteristics (both individual and environmental) of elderly persons residing in institutional settings differ from those residing in community-based settings? (2) How do these characteristics vary over time? (3) Are there differences in these characteristics between subgroups of institutionalized and non-institutionalized elderly? (4) What is the relationship between selected individual and environmental factors and the transition of the elderly between community and institutional residential settings? Data from six years of the Medicare Current Beneficiary Survey will be used to answer these questions. Understanding residential transitions will help staff in the Department improve surveys that monitor acute health and long-term care use in different settings (e.g., the Medical Expenditure Panel Survey) and address outstanding long-term care policy issues (e.g., allocation of resources between community and institutional settings).

ANALYSIS OF EMPLOYER GROUP LONG-TERM CARE INSURANCE

PURPOSE: This research had two components. First, a survey of employers offering their employees long-term care insurance benefits was conducted. This survey identified the existing group market and how it functions. Because most of the long-term care insurance market is composed of individual products--and because much of the employer information on long-term care insurance is fairly recent and not well explored--not much is known about the benefit packages, price, or design of these group products. The goal here was to identify quantitatively the "best practices" in the industry.

The second part of this contract concerned the design of possible long-term care insurance benefits for federal employees (and presumably their spouses, parents and retirees as well). To do this, the contractor reviewed the market survey to identify important elements of the existing employer group. They used this information, as well as appropriate actuarial methods, to develop several long-term care insurance coverage options for federal employees.

Throughout the life of the contract, the contractor conducted a series of informational meetings and seminars. These seminars helped inform the primary federal policy makers (such as the Office of Personnel Management) as to progress on this research and the accompanying design options.

The final reports include a preliminary and then a final stand-alone report on the employer market.

FINDINGS/RESULTS: The survey data indicate that, among employers offering the product, the employer market provides greater access to coverage than in the individual market. A majority of employers offered less restrictive underwriting or even guarantee issue policies (i.e., did not require health information) during initial offerings to active full-time employees. In addition, a majority offered coverage to at least one group in addition to full-time active employees (i.e., parents/in-laws, spouses, and retired employees), potentially extending the benefit well beyond the size of the employee population.

Most of the employers surveyed usually limited the number of benefit choices. For example, a majority offered two to four benefit amount options and a set package rather than allowing the employee to select every option separately. Nearly all employers used a single LTC insurer. These practices simplify the multiplicity of choices generally related to purchasing this product.

Despite the limited choices of benefits, data from a random sample of employers suggest that the benefit features of employer group plans generally resemble the most common individually purchased policies. All surveyed employers offered some type of inflation protection, Just under half of the surveyed employers offered some type of "non-forfeiture" benefit that would provide the purchaser some level of benefits if he or she lapses. The vast majority of plans (all but two) required the employee to pay the entire premium.

Employee purchase rates varied considerably by employer. While over 40 percent of employers experienced participation rates below 2 percent, 20 percent achieved participation of 10 percent or higher.

The survey also revealed that companies considered educating employees about the benefit very important, but also challenging. When asked what they would have improved about the insurance offering, employers (particularly those with low participation rates) most cited education and communication during the initial offering. Insurers corroborated this, and added that employers appeared to have better enrollment rates when senior management was actively involved.

ANALYSIS OF THE DISABILITY SUPPLEMENT TO THE NATIONAL HEALTH INTERVIEW SURVEY

PURPOSE: The Disability Supplement to the National Health Interview Survey (NHIS-D) was the first comprehensive survey of disability in the United States. The survey was unique in that it focused 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. ASPE was instrumental in the design and implementation of the survey, and this project develops a research agenda for analyzing the data. The goal is to produce both short-term products and final reports that will inform ongoing ASPE, Departmental, and Administration research and policy initiatives. Several reports will be produced that address a specific set of questions in four topical areas using the NHIS-D: welfare receipt and disability (including chronic illness), disability and chronic illness among low income populations, childhood disability and chronic illness, and employment and disability.

ASSESSMENT OF HOME CARE AND NURSING HOME/ASSISTED LIVING FACILITY BENEFITS USED BY HOLDERS OF PRIVATE LONG-TERM CARE INSURANCE

PURPOSE: Most experts agree that long-term care insurance products must include both nursing home and home care benefits if they are to be commercially acceptable. Yet private insurers as well as public payers are concerned about their ability to control home care claims, particularly given the potential substitution of formal home care services for care provided by families. The purpose of this study (co-funded by the Robert Wood Johnson Foundation) was to collect detailed information on the experience of long-term care policy holders who have filed insurance claims to receive home care benefits and how their formal and informal service use compares to a comparable population of elderly persons without private insurance. Primary data collection involved face-to-face interviews with approximately 1,700 persons (1,200 disabled insurance claimants and 500 next-of-kin of those claimants) to collect information on functional and medical characteristics of claimants as well as formal and informal services use. The sample of claimants was drawn from the files of insurance companies that account for the majority of private long-term care policies now in force.

FINDINGS/RESULTS: Satisfaction with their insurance benefits among claimants is generally very high, although it varied systematically across the eight participating companies. Most home care claimants and their informal caregivers felt that without the home care benefits, the claimant would have had to enter a nursing home or other residential care setting. Most nursing facility claimants did not believe that availability of insurance had made a difference with respect to whether they received care at home or in a nursing home; most had not previously used their policies to pay for home care before entering a nursing facility. Private long-term care insurance claimants received the same amounts of informal care from spouses as non-insured elders with comparable disabilities (respondents in the 1994 NLTCS), but private long-term care insurance claimants did receive less "hands-on" assistance from adult children. Often, interviews with claimants indicated that among the claimants' motives for purchasing private long-term care insurance was to avoid becoming overly dependent on adult children for assistance.

B

BALANCING LONG-TERM CARE

PURPOSE: This (co-sponsored by the Administration on Aging and the Robert Wood Johnson Foundation) project provided funding to develop comparative profiles of state long-term care systems so that states could assess their progress in "balancing" public support for home and community-based services as well as nursing home care for disabled elders. As a companion project, the Robert Wood Johnson Foundation provided separate funds for States to access technical assistance or "mentoring" from other States with more developed home and community-based/long-term care systems.

FINDINGS/RESULTS: Profiles of state long-term care systems were developed using a variety of indicators of supply and demand for publicly-funded services as well as indicators of state spending on various types of services per 1000 elders in the state's population and per eligible public program beneficiary. Data used to develop the indicators were primarily for 1996.

C

CASE STUDIES AND TECHNICAL ASSISTANCE FOR MEDICAID BUY-INS FOR PEOPLE WITH DISABILITIES

PURPOSE: In an effort to encourage more states to provide Medicaid to working individuals with disabilities, and to give states addition options for providing Medicaid to those individuals, Congress permitted states to expand their Medicaid programs (through a Medicaid "buy-in") and allow people with disabilities to continue to receive Medicaid services even if they return to work and have earnings greater than 100% of the Federal Poverty Level. The goal of this project is to: (1) examine the early implementation experiences of states that have opted for a Medicaid buy-in for people with disabilities, and (2) offer technical assistance to states on developing cost models, design features of a buy-in, as well as implementation and administration considerations for a buy-in. The project represents a unique opportunity to compare the design and implementation experiences of different states, and use the information gathered to inform both state and federal policy makers about strategies for improving systems that support the employment of people with disabilities.

CASE STUDIES OF NURSING HOME TRANSITION PROGRAMS

PURPOSE: The purpose of this project is to conduct case studies of Nursing Home Transition Programs in up to eight states (with possible additions depending on future grant awards). The programs being evaluated were developed and implemented with funding from an ongoing grant initiative sponsored by the Centers for Medicare and Medicaid Services (CMS) and the Office of the Assistant Secretary for Planning and Evaluation (ASPE). A case study approach is proposed for two reasons: (1) the vast differences in state Medicaid programs, state long-term care infrastructures, and proposed nursing home transition programs; and, (2) the small number of nursing home residents expected to participate in the transition programs.

Each case study will attempt to determine the most significant barriers faced by nursing home residents in returning to the community, and, to glean the relative success or failure of the strategies used by grantees to overcome these barriers. As CMS and ASPE intend to continue making additional grants in this area, an evaluation of grantee activity will assist federal policy makers in further grant making, and state policy makers in developing transition programs.

CASH AND COUNSELING: NEXT STEPS

PURPOSE: The major goals of this contract are: (1) to identify the technical assistance needs of states and other organizations interested in replicating and enhancing or developing the infrastructure needed to implement a "Cash and Counseling" model of consumer-directed long-term care services; (2) to set up a Research and Technical Assistance Center (RTAC) to be run out of Boston University that will begin to assist states interested in developing individual and family-directed home and community-bsed services using CMS's recently announced "Independence Plus" waiver templates; and (3) to develop and implement a plan for conducting research related to the development of infrastructure for consumer-directed programs.

CHANGES IN THE PREVALENCE OF DISABILITY IN THE OLDER AMERICAN POPULATION: HYPOTHESES AND EVIDENCE

PURPOSE: A number of national surveys (e.g., the National Long-Term Care Survey, the Survey of Income and Program Participation, the Medicare Current Beneficiary Survey, and the Health and Retirement Survey/Asset and Health Dynamics of the Oldest-Old Survey) and other sources have shown that recent improvements in life expectancy have been accompanied by significant declines in the number of elderly persons with activity limitations and/or cognitive impairments. Efforts among researchers and policy makers are now shifting toward understanding the reasons for these declines and the potential policy implications. Under this blanket purchase agreement, the contractor shall provide expert advice on changes in the prevalence of disability in the older American population and analysis of possible reasons for these changes. Specifically, the contractor shall (1) review the current literature on changes in elderly disability rates, (2) discuss the major hypotheses proposed by researchers to explain declines in the prevalence of elderly disability, and (3) review and critique the major studies and data used to evaluate one or more of these hypotheses.

CHARACTERISTICS OF NURSING HOME RESIDENTS

PURPOSE: Caring for persons with disabilities in the least restrictive setting is a major long-term care 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 a new source--the Minimum Data Set (MDS)--in nine states. The MDS consists of assessments which have been conducted on all nursing home residents in selected States as part of a Centers for Medicare and Medicaid Services (CMS) demonstration (and starting in the summer of 1998, the data will be collected in electronic form in all 50 States). We will learn much more about the medical conditions, functional needs, and specific services used by nursing home residents than was possible with previous data sets. We will also be able to study important subpopulations, especially the nonelderly. The policy implications of the findings will be assessed.

CHILDLESS ELDERLY BENEFICIARIES' USE AND COSTS OF MEDICARE SERVICES

PURPOSE: This project will examine the extent to which childless elderly--who are otherwise similar to older persons with children--cost more to the Medicare program, and will identify the specific groups of services (e.g., hospital inpatient, outpatient, home health, skilled nursing, physician, hospice, etc.) that are most susceptible to differential use by elderly Medicare beneficiaries with and without children. This will allow the Department to decide whether--and how--the growth in the size of older Americans with no children would need to be accounted for in planning for the Medicare program's financial future.

CLARIFYING THE DEFINITION OF HOMEBOUND AND MEDICAL NECESSITY USING OASIS DATA

PURPOSE: Home health care services are covered in full for Medicare beneficiaries who meet a set of coverage criteria. Though most coverage criteria are straightforward, there is no operational definition to either the homebound or the medical necessity criteria that can be used uniformly by providers and intermediaries. The vagueness of these two criteria led to wide interpretations by and subsequent problems for the Fiscal Intermediaries and providers as well. The purpose of this project is to develop and test a set of uniform and reliable indicators that can be systematically used to document and monitor two Medicare home health care coverage criteria: the "Homebound" and the "Medical Necessity" criteria. The indicators will be linked to items from the Outcome and Assessment Information Set (OASIS) in a decision tree algorithm (or a logic model). Two decision algorithms will be developed for the two criteria. The algorithms will represent a major step toward helping providers, Centers for Medicare and Medicaid Services (CMS), and the intermediaries in administering the home health benefit.

FINDINGS/RESULTS: Findings from the study show that the two OASIS algorithms successfully identify patients highly likely to meet the homebound and medical necessity criteria for Medicare home health care. Using OASIS data alone, almost 90% of the 600 patients in the sample were classified as meeting the medical necessity criterion. The figure for the homebound criterion is lower (48.5%). It is critical to note, however, that individuals may be clearly eligible for home care benefits even though they are not captured by the OASIS algorithms. Nurses who were experts in chart review, in fact, concluded that over half of the patients who were not captured by the homebound algorithm did meet the requirement based on a careful review of patients' medical records.

COMPARATIVE INTERNATIONAL DATA ON AGING: HEALTH AND DISABILITY INDICATORS

PURPOSE: The purpose of this project was to encourage international comparative data collection. This was a follow-up to the G8 Summit Aging Experts Meeting in May 1997.

FINDINGS/RESULTS: A two-day international experts meeting was convened by OECD in December 1999.

COMPARATIVE STUDY OF THE OUTCOMES AND COSTS ASSOCIATED WITH MEDICARE POST-ACUTE SERVICES IN SKILLED NURSING FACILITIES, REHABILITATION HOSPITALS/UNITS, AND HOME HEALTH SETTINGS

PURPOSE: Using the outcome measurement instrument developed for patients suffering from a stroke (i.e., developed under the project Medicare Post-Acute Care: Quality Measurement), two projects have been combined to study the outcome and costs of Medicare post-acute care services for Medicare beneficiaries who have suffered a stroke and are discharged from acute care hospitals to skilled nursing facilities (SNFs), rehabilitation hospitals/units (RFs), home health agencies (HHAs), or use multiple post-acute care settings. These studies will examine in a post-prospective payment system environment the: (1) demographic and health related characteristics of and assess the extent of overlap in stroke patients treated in each of the post-acute care settings; (2) patterns of service use and costs associated with the treatment of similar patients in each setting and across episodes of care; (3) outcomes across an episode of care for similar Medicare beneficiaries treated by each post-acute provider type and those treated by multiple providers; (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 may be most useful to incorporate into on-going reporting requirements to monitor outcomes in each post-acute care setting and across episodes of care.

Medicare treats post-acute care providers (skilled nursing facilities, rehabilitation hospitals, and home health agencies) differently--in terms of payment, eligibility, coverage, and certification--even though these providers may be becoming more similar in the types and intensity of services they provide and in the types of patients they serve. This differential treatment may encourage admission to more costly settings than is necessary or the delivery of unnecessary service. It is important to understand the extent to which post-acute providers serve patients with similar conditions and whether the use of one type of provider or pattern of care relative to another results in superior health outcomes and at what cost. This policy concern becomes even more urgent in light of the extraordinary changes now being implemented in Medicare payment policies for post-acute care providers. Each of Medicare's post-acute care providers is or will shortly be subject to new prospective payment systems that will differ among provider type. Payment reforms may create incentives to reduce services to or avoid altogether medically complex, heavy care patients. It is important that the Department understand the impact of its payment policies on the quality of Medicare post-acute services and beneficiary access.

CONTRIBUTION OF CHANGES IN MEDICATION USE TO IMPROVEMENTS IN FUNCTIONING AMONG OLDER ADULTS

PURPOSE: A possible explanation for the recently observed decline in the prevalence of disability in the U.S. elderly population is that better treatment of chronic diseases through medical procedures and pharmaceuticals has led to an improvement in functioning in the elderly population. Lending some credence to this hypothesis is research by Freedman and Martin (forthcoming in the American Journal of Public Health) that documents an increase in the prevalence of chronic health conditions such as arthritis, diabetes, stroke and heart disease during the same period that disability has fallen. They hypothesize that changes in the management of chronic disease--and changes in medication use in particular--have caused chronic health conditions to become less debilitating as their prevalence has increased.

Drug treatment has become an increasingly important aspect of medical care for older Americans with approximately nine out of ten older Americans currently take one or more prescription drugs daily. During the 1980s and early 1990s there have been major shifts in the classes of drugs prescribed for some of the more debilitating chronic conditions. For example, for arthritis, increased availability of disease modifying anti-rheumatic drugs, non-steroidal anti-inflammatory drugs, and, for women, estrogen replacement therapy may be associated with fewer debilitating effects. New classes of psychotropic agents have become available to treat depression and other psychiatric conditions, which have been identified as a major cause of premature disability among the elderly. Drug treatments for diabetes and hypertension have also expanded significantly during this period.

This project supplements an existing National Institute on Aging grant to Vicki Freedman of the Philadelphia Geriatric Center. Under the grant Dr. Freedman is examining the role of changes in the use of medications in explaining aggregate changes in functioning in the U.S. population aged 51-61. The data sets for the analyses are the first (1992) and fourth (1998) waves of the Health and Retirement Survey (HRS), which provide nationally representative cross-sections of the noninstitutionalized population in this age range.

D

DATA ANALYTIC SUPPORT FOR THE REVIEW OF LONG-TERM CARE POLICY OPTIONS

PURPOSE: This project had two distinct foci. One was the analysis of data from the 1994 National Long-Term Care Survey (NLTCS) to assist the Centers for Medicare and Medicaid Services (CMS) actuaries in making cost estimates of the potential effects of eliminating or redefining the requirement that Medicare beneficiaries must be "homebound" in order to access the Medicare home health benefit. The second was to analyze data from the Community Caregiver Supplement to the 1996 National Medical Expenditures Survey (NMES) Nursing Home Component. The purpose of this analysis was to understand the factors that influenced decisions by severely disabled persons and their family members that the severely disabled person should enter a nursing home. This analysis will help guide the work of the CMS/ASPE Task Force on Promoting Home and Community-Based Alternative to Nursing Home Care. In particular, the analysis will help design the "Nurse Home Transition" grants program for the states which ASPE and CMS plan to sponsor jointly.

FINDINGS/RESULTS: Analyses of the 1994 NLTCS have been completed. A memorandum of understanding was drafted with the Agency for Health Care Policy Research to permit work to begin on the NMES data; however, AHCPR was never able to complete the work that was required.

Results from the NLTCS analyses were shared with CMS staff, including the CMS Actuary's office and used to estimate the costs associated with policy options for changing or eliminating the Medicare HHA "homebound" requirement. These analyses served as the basis for the Congressionally mandated report on Options for Redefining the Medicare Homebound Requirement which CMS sent to Congress in 1999.

DEFINING AND MEASURING CARE COORDINATION FOR PERSONS WITH DISABILITIES IN MEDICAID MANAGED CARE

PURPOSE: The goal of this project is to develop a conceptual framework that will guide a definition of coordination of care and to develop corresponding measures of care coordination which can, in future work, be field tested for validity and reliability, and become new tools to be used by states and managed care organizations to improve their accountability and performance.

DESIGN OPTIONS FOR MODELING POLICY IMPACTS ON WORKING AGE ADULTS AND CHILDREN WITH DISABILITIES

PURPOSE: The Department currently has a limited ability to model the impacts of alternative health, long-term care and employment related policies on the program participation of younger individuals with disabilities and public and private costs, both in the short and long run. For example, none of the current models were capable of generating estimates about the cost and impact of the Kennedy-Jeffords proposal to extend Medicaid and Medicare coverage to SSI and/or SSDI disabled adults who return to work. The purpose of this project is to develop preliminary design options for constructing a microsimulation model of children, working age adults and their families. Such a model would age a sample of persons over time, keeping track of changes in their disability status, income, education, living arrangement, program participation, employment, health insurance status, health and long-term care service use, including personal assistance services/equipment.

DESIGNING A BLUEPRINT FOR OUR FUTURE: A GUIDE FOR CONSUMER-CENTERED MODELS OF CARE IN NURSING HOMES

PURPOSE: The purpose of this project is to develop a user-friendly book for states, providers, and consumers: (1) examining and documenting the new directions in consumer-centered care in nursing home settings; (2) exploring real or perceived regulatory barriers to designing consumer-centered models of care; (3) documenting innovative practitioners who have implemented consumer-centered activities and programs in their nursing homes; and (4) hypothesize about what is possible in the future in the provision of consumer-centered nursing home services and supports.

DESIGNING A NATIONAL SURVEY OF DIRECT CARE WORKERS IN LONG-TERM CARE SETTINGS

PURPOSE: The purpose of this project is to design a national survey of direct care workers in long-term care settings in order to obtain data on the size and characteristics of this workforce. The best available data suggests that there are approximately 2 million workers in these settings. This project will: (1) design a sampling frame for a nationally representative sample of direct care workers in long-term care settings; (2) establish data collection procedures for the survey; (3) develop data collection instruments; and (4) prepare an OMB clearance package.

DESIGNING A PRIVATE LONG-TERM CARE INSURANCE CLAIMANTS "ADMISSIONS COHORT" STUDY

PURPOSE: The purpose of this project is to design a research study of an admissions cohort of long-term care insurance claimants. Claimants will be interviewed immediately upon triggering their benefits and will be followed for approximately 18 months. This project is part of a long-term research agenda being implemented by ASPE to better understand the circumstances or factors that motivate elders who have purchased private long-term care insurance benefits to file claims for benefits and how the presence of private insurance affects decision-making about formal services use for those who have been approved for benefits.

DEVELOPING A RESEARCH AND POLICY AGENDA: AFFORDABLE RESIDENTIAL SUPPORTS WITH SERVICES/ASSISTED LIVING

PURPOSE: This project is aimed at identifying key policy and programmatic challenges for bringing housing and services together for low-income older Americans in a way that allows some "aging in place" and prevents unnecessary nursing home admissions. It will assist ASPE to develop a policy and research agenda that is responsive to changing trends, to actions on Capitol Hill, and to the desires of the Administration to ensure an array of community supports for aging seniors.

DEVELOPING CONCISE MEASURES OF CHILD DISABILITY

PURPOSE: This project will support Network activities related to the development of a set of concise measures of childhood disability. The project will capitalize on recent conceptual and methodological developments in the demographic, social and biomedical study of disability. Specifically, the project will use data from the 1994 and 1995 disability supplements to the National Health Interview Survey (NHIS-D), the 1997 National Health Interview Survey (NHIS), and the 1992 and 1993 panels of the Survey of Income and Program Participation to develop concise measures of disabilities in children. The method of development will use two leading conceptual models of disability: that of the National Center for Medical Rehabilitation Research (NCMRR) and that of the World Health Organization (WHO). The intent of these concise measures is to provide reliable sets of indicators that are sensitive to subgroups of children to be used in population sample surveys and survey-based surveillance systems.

The childhood disability measures developed under this project will be used to provide a national estimate of the number of children with disabilities that is consistent with current conceptual models of disability. Including these measures on Departmental survey efforts is a cost effective means for collecting information on the prevalence of childhood disability and the characteristics of the population. Childhood disability information is needed for several Departmental initiatives (e.g., Healthy People 2010).

DEVELOPING CONCISE MEASURES OF CHILD DISABILITY: FOCUS ON MENTAL HEALTH AND LEARNING DISABILITIES

PURPOSE: This project is a continuation of support for Network activities related to the development of a set of concise measures of childhood disability with the specific focus on mental health and learning disabilities. The project will continue to capitalize on recent conceptual and methodological developments in the demographic, social and biomedical study of disability. Specifically, the project will use data from the 1994 and 1995 disability supplements to the National Health Interview Survey (NHIS-D), the 1997 National Health Interview Survey (NHIS), and the 1992 and 1993 panels of the Survey of Income and Program Participation to develop concise measures of disabilities in children. Using a theoretically based approach, the project will identify mental disorders and learning disabilities and their associated disabilities in these national surveys, and develop concise measures of these areas of disabilities in children.

The purpose of the Interagency Agreement that supports this activity is to provide resources to obtain consultation of two experts to guide this special aspect of the project: an expert on child development with particular expertise in minority children and school-age children of low birth weight; and a pediatrician who will contribute a medical perspective on issues in age-appropriate development and special needs school population.

The new concise measures developed by this project are intended for inclusion on population sample surveys and survey-based surveillance systems to monitor the prevalence of childhood disability. The childhood disability measures developed under this project will be used to provide a national estimate of the number of children with disabilities that is consistent with current conceptual models of disability. Including these measures on Departmental survey efforts is a cost effective means for collecting information on the prevalence of childhood disability and the characteristics of the population. Childhood disability information is needed for several Departmental initiatives (e.g., Healthy People 2010).

DEVELOPMENT OF AN ASSISTIVE TECHNOLOGY AND ENVIRONMENTAL ASSESSMENT INSTRUMENT FOR NATIONAL SURVEYS

PURPOSE: The overall purpose of this project is to develop, pilot, and disseminate an instrument to be used in national surveys to collect assistive device and environmental information from working age adults with disabilities and older persons living in the community. The project will include an analysis of data from the pilot study, and produce a report detailing the process, pilot work, findings, and final instrument. The dissemination phase will include a meeting of the major investigators on national health and disability surveys--both government and private (e.g., National Health Interview Survey, Current Population Survey, National Long-Term Care Survey, Panel Study of Income Dynamics, Health and Retirement Survey)--to present the results of the pilot study and discuss ways of appropriately incorporating all or part of the instrument in various surveys.

DEVELOPMENT OF RESEARCH FILES CONTAINING THE 1994-1998 NATIONAL HEALTH INTERVIEW SURVEYS LINKED WITH SOCIAL SECURITY AND MEDICARE PROGRAM DATA

PURPOSE: This project will provide improved general-purpose information about the health and well-being of the population in the United States and document trends over time, especially for those with disabilities and/or chronic conditions. It will provide a more complete description of the population with disabilities than can be obtained from the survey data alone. The project will also provide data on specific topics of interest to ASPE (e.g., the health status of Medicare beneficiaries before they became eligible for Medicare). In addition, it will provide information on a number of methodological issues, such as the correspondence between administrative files and survey responses. This project will identify significant gaps in our knowledge of persons with disabilities, and help eliminate those gaps in future data collection efforts.

DISABILITY SUPPLEMENT TO HCFA EVALUATION OF MEDICAID MANAGED CARE IN TENNESSEE

PURPOSE: This project adds a disability component to an existing HCFA (now the Centers for Medicare and Medicaid Services (CMS)) evaluation of Medicaid 1115 waiver demonstrations in five states, with a focus on the Tennessee evaluation. The study will follow the experiences of SSI disabled children and adults (physically disabled, mentally ill, mentally retarded, or developmentally disabled) enrolled in the TennCare and TennPartners Programs. The project will conduct in-depth qualitative analyses of the State's experience in enrolling individuals with disabilities into managed care systems, and will conduct quantitative analysis to examine cost and utilization data for these populations. The supplement will also include a survey of disabled consumers to examine issues of satisfaction, quality, health status, and functioning.

DISABILITY SUPPLEMENT TO HCFA EVALUATION OF THE OREGON HEALTH PLAN

PURPOSE: HCFA's (now the Centers for Medicare and Medicaid Services (CMS)) existing evaluation examines the impact of changes in the financing and delivery of health care services to AFDC recipients and low income persons not eligible for Medicaid in the State of Oregon, through the 1115 waiver demonstration authority. This supplement to the Oregon evaluation adds a disability focus. The supplement will focus on the experiences of SSI disabled children and adults (physically disabled, mentally ill, mentally retarded, developmentally disabled) enrolled in the Oregon Health Plan. The disability supplement will examine cost and utilization data, and link these data to functional data collected by state agencies. In addition, the supplement will conduct a survey of consumers and providers to examine issues of satisfaction, access, quality, health status, and functioning.

DUAL ELIGIBLES MULTI-STATE DATA SET

PURPOSE: This project, coordinated with the Health Care Financing Administration, will develop a linked Medicare/Medicaid data base of beneficiaries to assist in research in this population. The project will create an integrated data base with Medicare and Medicaid data to test risk adjustment methodologies for dually eligible beneficiaries, and conduct studies on program interactions between Medicare and Medicaid.

E

ELECTRONIC HEALTH INFORMATION IN POST-ACUTE AND LONG-TERM CARE

PURPOSE: The purpose of this project is to ascertain: (i) the current status of the implementation of electronic information systems in post-acute and long-term care settings; and (ii) the characteristics of and the factors that have facilitated or limited extensions of more robust electronic medical records and information systems from acute care settings into post-acute care and long-term care settings. More specifically, the project is intended to address the following research questions:

• What electronic medical records and information systems are being used in acute, post-acute and long-term care?
• Which acute care health delivery systems that employ robust electronic medical records and information systems in the course of treating patients have extended electronic information systems into post-acute/long-term care?
• In selected acute care settings that have extended electronic information systems into affiliated post-acute/long-term care settings:
  • What are the characteristics of the electronic information systems in both the acute, post-acute and long-term care settings? For example: What types of information are included in these systems? What messages are sent using these systems? Do these electronic systems support clinical decision making, monitoring the effectiveness of interventions, etc.? What messaging standards are used? What types of communication (e.g., one-way vs. two-way) are supported by these systems? How do these systems limit or enhance communication?
  • What organizational, cultural, and technological barriers were confronted when extending electronic health information systems into post-acute/long-term care, and how were these resolved?
  • What are the costs and benefits of extending such electronic health information systems into post-acute/long-term care?
  • What additional electronic information systems are needed in post-acute/long-term care and what either supports or presents barriers to their implementation?
• What next steps could be pursued in extending electronic medical records and information systems into post-acute/long-term care?

ESTIMATING THE SIZE AND CHARACTERISTICS OF THE LONG-TERM CARE POPULATION

PURPOSE: With Americans' increasing reliance on home and community-based services and assisted living facilities, it is critical for policy makers to monitor trends in long-term care use and the characteristics of the population outside of the traditional nursing home. Currently, there are two primary sources of comprehensive information on the living arrangements of older Americans and their use of long-term care services: the decennial Census and surveys specifically designed to collect data on the long-term care population (e.g., the National Nursing Home Survey [NNHS], the Medicare Current Beneficiary Survey [MCBS], National Long-Term Care Survey [NLTCS]). Whether persons are classified as residing in an institution or not is greatly dependent on how the sampling frame is constructed (in the case for surveys) and/or how person's living arrangements are determined. Unfortunately, the census and surveys frequently use different data collection methods and approaches to categorizing living arrangements and long-term care service use. As a result, estimates of the number of persons in certain residential settings vary widely. For example, based on the 1996 MCBS, the number of older Americans living in assisted living facilities is approximately 420,000; however, the corresponding estimate from the 1999 NLTCS is nearly twice as high (810,000). Working with the Federal Interagency Forum on Aging-Related Statistics, DALTCP staff will conduct a series of analyses of the most recent data to estimate and interpret variations in the size and characteristics of the long-term care population in different residential settings.

EVALUATION OF PRACTICE IN CARE (EPIC)

PURPOSE: From 1989 to 1992, there was a 210% increase in Medicare expenditures for home health services. This increase in utilization has generated widespread policy interest in appropriate 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 analyze "episodes" of care under the Medicare home health benefit, assess the actual practice of care, the extent to which there is variation in practice between acute and long-term patients, and the factors that account for that variation. This study will also examine decision-making processes between patients, providers and physicians. What takes place during a visit and between visits as "actual practice" has 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 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

PURPOSE: This project, co-sponsored by ASPE and CMS'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.

FINDINGS/RESULTS: In brief, the program concludes that the capitated model tested in the Demonstration is not viable, in part because the population of special needs children in the District is too small to protect a plan against severe financial losses. Despite a proposal by DC Medicaid to add stop-loss protection, the program announced that it will not enter the waiver re-competition.

EXAMINATION OF MEDICAID'S ROLE IN ASSISTED LIVING

PURPOSE: The purpose of this delivery order contract is to examine current state policies and practices regarding Medicaid funding for services provided in assisted living settings. An understanding of these policies and practices is needed to inform the Secretary and the Department about Medicaid's current and potential role in providing services in this increasingly popular residential setting.

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FILE PREPARATION AND PRELIMINARY DATA ANALYSIS OF 1999 NLTCS/ICS

PURPOSE: The purpose of this project is to prepare the 1999 NLTCS/ICS data file for analysis and to perform some preliminary descriptive analyses. This is a necessary prerequisite for more detailed analyses, which will be used to update the ASPE booklet "Informal Caregiving: Compassion in Action" (published in 1998, based on 1995 NLTCS data).

FRONTLINE WORKERS IN LONG-TERM CARE

PURPOSE: The purpose of this project is to heighten the awareness of federal, state and local policymakers about issues related to the development of a quality long-term care workforce to meet the needs of our aging society. The project will identify successful training, recruitment and retention models for frontline long-term care workers, and policy and research activities that can enhance and promote the expansion of a quality paraprofessional long-term care workforce. The Office of Disability, Aging and Long-Term Care Policy will collaborate with the Robert Wood Johnson Foundation on this project. The Centers for Medicare and Medicaid Services, HRSA, AoA, the Department of Education, AHRQ and the Department of Labor will also be involved in this project.

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HANDBOOK OF MEDICAID OPTIONS FOR COMMUNITY-BASED SERVICE COVERAGE OF WORKING AGE ADULTS WITH SEVERE MENTAL DISORDERS

PURPOSE: The purpose of this project is to develop a Handbook that describes and clarifies Medicaid's federal rules and regulations governing the application of Medicaid Options–particularly the Rehabilitation, the Targeted Case Management, and Clinic Options–in creating an array of community-based mental health services, such as those constituting an Assertive Community Treatment (ACT) program, for working age adults with severe mental disorders. The Handbook also will provide examples of the range of community-based services for this population as drafted by states and supported by Medicaid as a practical guide for application by other states. Although Medicaid is not the only funding source for services for this population, Medicaid is important in providing community-based care for adults with severe mental disorders.

HEALTH PROMOTION AND AGING: A BLUEPRINT FOR CHANGE FOR THE 21^st CENTURY

PURPOSE: The purpose of this study is to describe health promotion, disease prevention and health education activities for the elderly, highlighting the range of these efforts throughout the Department. One of the primary goals of this effort will be to identify ways the Department can enhance health promotion/disease prevention programs for the elderly. This project will analyze health promotion/disease prevention strategies that seek to: (1) reduce behavioral risk factors; (2) encourage the use of preventive services; (3) strengthen the role of public health agencies in encouraging healthy behaviors; and (4) educate the elderly, their families and elder care providers in disease prevention and health promotion.

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IMPUTATION OF ANNUAL FAMILY INCOME ON THE 1990-1996 NATIONAL HEALTH INTERVIEW SURVEY

PURPOSE: This project, to impute annual family income on the NHIS, will complement the imputation work that has already been carried out and will benefit from the advice of the senior statistician at the University of Michigan who directed work on the imputation of the 1993-1995 family resources file.

FINDINGS/RESULTS: The imputed data is available from NCHS.

INFORMAL CAREGIVERS SUPPLEMENT TO THE 1999 NATIONAL LONG-TERM CARE SURVEY

PURPOSE: The Office of the Assistant Secretary for Planning and Evaluation (ASPE) has been involved in the past in designing a modest respite benefit for Medicare beneficiaries with Alzheimer's disease for inclusion in the President's budget. In 1998, there is renewed interest in having proposals for respite services and other caregiver supports, on a broader scale, incorporated into the President's long-term care budget initiative. We are currently working with White House, OMB, and Treasury staff to explore the use of tax incentives to help informal caregivers be able to afford paid home care services as a supplement to their own informal efforts. In order to respond to these kinds of policy analysis requests, it is important for ASPE to look ahead and anticipate future data needs. In this case, the need is to have data collection mechanisms in place to track, over time, changes in the characteristics of informal caregivers of the disabled elderly, as we have to follow changes in the population of disabled elders themselves. ASPE supported the first and second Informal Caregiver's Supplement to the National Long-Term Care Survey in 1982 and 1989 respectively. A third round of data collection on informal caregivers is now needed in order to remain up-to-date.

Family members typically initiate the process of nursing home placement for disabled elders when they feel that the disabled elder needs more help than can be provided in a home setting. Often families come to such a decision when one or more family caregivers have been providing upwards of 60 hours per week of unpaid assistance. This project will enable in-depth analysis of the conflicts informal caregivers experience between employment and eldercare as well as provide information about the health status of caregivers and measures of caregiver stress and burden. These data can then be used in crafting policy initiatives to support caregivers and prevent "caregiver burnout" which could result in premature institutionalization. It will help determine whether and to what extent caregivers' age, marital status, relationship to the care recipient, household income, employment, health status, and various measures of caregiver stress and burden are associated with greater or lesser use of supplemental formal care. We will also be able to measure the extent to which caregivers as well as the disabled elders themselves experience out-of-pocket spending for supplemental home care.

FINDINGS/RESULTS: Data collection was completed in 1999. A "beta" file was made available in December 2000.

INTERNATIONAL COMPARATIVE DATA AND ANALYSIS OF HEALTH CARE FINANCING AND DELIVERY SYSTEMS

PURPOSE: This project will help support the Centers for Medicare and Medicaid Services (CMS) work on: (1) maintenance and improvement of the annual Organisation for Economic Cooperation and Development (OECD) 30-country health data collection with respect to data quality, coverage, completeness and timeliness of the data collection, including documentation of sources and methods; (2) improved health accounts for better monitoring of changes in expenditure on health and its financing, and improved OECD Secretariat estimates to bridge gaps in national reporting on most recent expenditure trends; (3) analysis of developments in OECD health systems regarding health care financing and reform, and performance of health care systems; and (4) preparation of publications. This work is part of an ongoing project funded in part by the CMS and the member countries of the OECD. The products of this ongoing international initiative provide the foundation for health policy debate among the member nations.

INTERNATIONAL TRENDS IN ELDERLY DISABILITY RATES: MEASUREMENT AND POLICY CHALLENGES

PURPOSE: The purpose of this project is to support ongoing work related to monitoring and understanding changes in the prevalence of disability in an international context. This work would focus on disability measurement issues (e.g., developing consistent measures of elderly disability) and efforts to understand the policy implications of changes in elderly disability rates.

INVENTORY OF LONG-TERM CARE RESIDENTIAL PLACES

PURPOSE: The purpose of this agreement is to transfer funds from ASPE to the National Center for Health Statistics to support the development of statistical and analytic reports from the forthcoming Inventory of Long Term Care Residential Places (ILTCRP). Although the National Nursing Home Survey collects data on nursing home residents, there is no comparable mechanism for collecting data on assisted living and related facilities. The inventory represents the first step in expanding the National Nursing Home Survey to include other long-term care places.

INVITATIONAL WORKING CONFERENCE ON NATIONAL GOALS, THE STATE-OF-KNOWLEDGE AND A NATIONAL AGENDA FOR RESEARCH ON INTELLECTUAL AND DEVELOPMENTAL DISABILITIES

PURPOSE: The purpose of this agreement is to co-sponsor a conference to be held by the President's Committee on Mental Retardation. The conference will: (1) identify and articulate the goals of the Nation for people with intellectual and developmental disabilities; and (2) review the ways in which our national knowledge base and research endeavors contribute to monitoring and realizing success toward those national goals. The intent of the conference is to specify a national agenda of research, evaluation, demonstration and dissemination in order to maximize the potential for reaching the national goals by focusing on topics and issues of significance and by identifying priorities for resource allocations which demonstrate the most potential benefit.

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LEXICON OF TECHNOLOGIES IN LONG-TERM CARE SETTINGS

PURPOSE: Comprehensive and systematic information on existing and emerging technologies in long-term care settings is not currently available, and there is no existing framework to document and evaluate these systems' ease of use, cost benefit ratio, and contribution to the quality of life of service recipients and quality of care they receive. In addition, the barriers to the implementation of such technologies in long-term care settings have not been systematically identified. This project aims at filling these important information gaps. Thus, the main purpose of this project is to construct and maintain a searchable, updateable lexicon (i.e., a comprehensive database) of existing and emerging technologies in long-term care settings that will be made available through a web-based interface. The project also aims at identifying and examining legal, financial, and social barriers to the process of implementing these technologies in long-term care settings.

LONGITUDINAL STUDY OF WELFARE REFORM AND ITS IMPLICATIONS FOR PERSONS WITH DISABILITIES

PURPOSE: This project is a supplement to an ongoing four-year study of the implications of welfare reform for low-income families living in Boston, Chicago, and San Antonio (a summary of the study is available at http://www.jhu.edu/~welfare). The broader study is being undertaken by researchers at Johns Hopkins University, Pennsylvania State University, Harvard University, University of Chicago, and the University of Texas-Austin. Funds are being used to explore how welfare reform is affecting the lives of a particularly vulnerable subset of the welfare population--adults and children with disabilities. This will be accomplished by conducting longitudinal case studies of families with members with disabilities receiving TANF and through a broader survey effort. The purpose of the data collection efforts is to better understand how recent work participation requirements and time limits under welfare reform are affecting service utilization, family member's health and development, support networks, parenting, and child care arrangements.

ASPE, the Administration for Children and Families, and the Administration on Developmental Disabilities are the primary funders of the disability component of the study. The National Institute of Child Health and Human Development is the primary funder of the broader study, along with several private foundations. The first round of interviews for the main survey were conducted from March 1999 until December 1999. Fieldwork in the ethnography component began in fall 1999 and is ongoing. Results form the project will be available over the course of the study. Listed below are the current publications from the broader study; results from the ethnographies focused on disability will be available later.

LONG-TERM CARE INSURANCE CLAIMANTS "ADMISSIONS COHORT" STUDY: DATA COLLECTION AND ANALYSIS PHASE

PURPOSE: The overall purpose of this project is to enhance DALTCP's understanding of the circumstances or factors that motivate elders who have purchased private long-term care insurance benefits to file claims for benefits, and how the availability of insurance coverage influences their service-seeking behavior after they have been approved to receive benefits. The findings of this project are expected to help the government assess the future potential of private long-term care insurance as a method of financing long-term care services, especially home and community-based services.

LONG-TERM CARE INSURANCE FOR THE FEDERAL FAMILY: A STUDY OF BUYERS, NON-BUYERS AND NON-RESPONDENTS

PURPOSE: The purpose of this project is to analyze survey and insurance policy sales data on the attitudes and perspectives of the federal workforce related to the first offering of group long-term care insurance. The analysis shall primarily focus on the motivations behind different participation decisions as well as on measuring the general level of awareness of the risk of needing long-term care. Long Term Care Partners (the insurer making the federal offering) is funding and managing the collection of the survey data, which will be provided to ASPE for analysis. The survey sample is drawn from three distinct groups: buyers (bought the product), non-buyers (requested information but did not buy), and non-respondents (neither bought the product nor requested information). The results of the data analysis shall be compared to other studies of buyers and non-buyers in the general group and individual markets. The project will provide insights into the motivations of various groups to participate, or not, in this long-term care insurance offering, and gauge the importance of awareness of long-term care risk in the insurance purchase decision.

LONG-TERM CARE INSURANCE INVITATIONAL CONFERENCE

PURPOSE: The purpose of this project is to provide logistical and conference planning support for a two-day 100-person invitational conference on long-term care insurance. The goal of the conference is to bring together two groups that do not typically interact: representatives of the long-term care insurance industry who design and administer policies or do market research, and public policy officials. The objectives of this meeting will be to break down barriers, share information, and develop a joint research and policy agenda for future work. Conference attendees will include: long-term care insurance providers, university researchers, academia, long-term care insurance researchers, federal and state government officials, and long-term care insurance advocacy representatives.

LONG-TERM CARE MICROSIMULATION MODEL

PURPOSE: This project will update and expand the capability of the Brookings/ICF Long-Term Care Financing Model, which currently takes a national sample of persons, ages them over time, and estimates their long-term care use and financing when they become elderly. It will incorporate results from recent surveys of nursing homes and home care utilization; e.g., the 1989 and 1994 National Long-Term Care Surveys. The model will also be expanded to include acute care use and expenditures, and the period of simulation will be extended to 2050. The economic assumptions will be updated.

The model will continue to be used to project future trends and to perform policy simulations, including expanded coverage for nursing home and home care, changes in Medicaid eligibility and services, and expanded enrollment in private long-term care insurance plans. It will also be used to estimate the impact of changing trends in disability and the combined burden of acute and long-term care services on the elderly.

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MANAGED DELIVERY SYSTEMS FOR MEDICARE BENEFICIARIES WITH DISABILITIES AND CHRONIC ILLNESSES

PURPOSE: The last decade has brought tremendous changes in the health care system as payers and providers struggle to bring health care expenditures under control. However, it remains unknown how this transforming health care system will affect the health and well-being of people with significant disabilities and chronic illnesses. The Medicare program has lagged behind the private insurance market and even the Medicaid program in the proportion of its beneficiaries participating in managed care plans. In 1995, about 2.3 million older persons out of a total Medicare beneficiary population of 25 million were enrolled in the Medicare Risk Program implemented under TEFRA. There is little information on the experience of older persons with disabilities in these and other managed care plans.

The purpose of this study is to: (1) address the characteristics of elderly persons with chronic illnesses and disabilities that need to be accommodated in designing and operating managed delivery systems (MDS); (2) examine the issues that health care policy makers, plan administrators and providers need to consider in designing, operating, and monitoring MDS for the elderly with disabilities and chronic illness; (3) examine how MDS actually perform in meeting the needs of the elderly disabled; and (4) identify the factors that influence the success of MDS in meeting the needs of this population.

MANAGED LONG-TERM CARE STUDY

PURPOSE: The number of Medicaid beneficiaries enrolled in managed care grew from 4.8 million in 1993 to 16.6 million in 1998. During 1998, there were more Medicaid beneficiaries in managed care than there were in fee-for-service. Given the strength of the movement toward managed care, it is no surprise that states have begun to experiment with managed long-term care. Selected states have developed and implemented managed long-term care programs for a wide set of beneficiaries. Arizona, Michigan Texas, and Wisconsin are currently operating such programs and are planning on expansion. While many of these programs are being evaluated, very little is known about the public and private organizations that are entering this new managed care market. This study attempts to get a better understanding of what organizations are moving into this arena and a preliminary look at how they manage the provision of long-term care services as compared to the fee-for-service models with which we have become familiar.

MARKET CHANGES OF THE SUPPLY AND USE OF HOME HEALTH SERVICES: 1996-2000

PURPOSE: The purpose of this contract is to evaluate changes in the Medicare home health service delivery system over the past five years. Between 1996 and 2000, Medicare home health services have experienced several major changes that led to a significant reduction in the number of home health care providers and decline in the use of Medicare home health services. Findings from the study will assist HHS in its continued monitoring efforts of the home health benefit as well as provide recommendations for future policy options.

MEDICARE POST-ACUTE CARE: QUALITY MEASUREMENT

PURPOSE: This project developed four outcome measurement instruments and methods of data collection that could be used in future research to examine outcomes and costs associated with Medicare post-acute care (PAC) services for patients who have suffered a stroke, congestive heart failure (CHF), pneumonia, and back and neck conditions. These conditions were selected because of their prevalence within and across PAC settings. The instruments and the data collection methodology will be revised based on two field tests and technical expert input. The outcome measurement instrument developed for stroke patients will be used in other ASPE funded studies (i.e., Comparative Study of the Outcomes and Costs Associated with Medicare Post-Acute Services in Skilled Nursing Facilities, Rehabilitation Hospitals/Units, and Home Health Settings).

FINDINGS/RESULTS: The final report provides the policy framework for the development of these instruments, and discusses the methods used to develop the instruments. In addition, an instrument is available for each of the studied conditions.

MEDICARE SERVICES UTILIZATION BY BENEFICIARIES WITH PRIVATE LONG-TERM CARE INSURANCE COVERAGE

PURPOSE: The purpose of this project is to link Medicare utilization data to other data elements for the community-based claimants included in the Long-Term Care Insurance Panel. This will be done in an effort to get a better understanding of the relationship between private long-term care insurance and the use of Medicare financed services. The proposed contract will examine the relationship between long-term care and acute or post-acute care service utilization prior to, during and after the time of claim. The project will also include comparisons to similarly disabled noninsured community residents in the general population using the 1994 NLTCS sample. Self-reported data in the previously completed study indicated that private long-term care insurance claimants use significantly less Medicare home health services than a comparable non-insured group. However, the findings for the non-insured group are based on National Long-Term Care Survey data which includes actual Medicare claims for home health. This study will enable a more rigorous comparison of claims data for both the private ltc insurance claimants and the comparable NLTCS respondents.

MONITORING THE HEALTH OUTCOMES FOR DISABLED MEDICARE BENEFICIARIES

PURPOSE: 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 (Komisar and Feder 1998, Smith and Rosenbaum 1998, MedPAC 1999, GAO 1998, Gage, 1998). Disabled Medicare beneficiaries are especially 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 project's main focus is to examine BBA impacts on Medicare beneficiaries' access to care, costs, satisfaction, and quality of care. Also examined will be the effects on agencies and on the overall health system.

MONITORING TRENDS IN ELDERLY DISABILITY AND THE USE OF ASSISTIVE DEVICES

PURPOSE: This project will analyze the 1984-1999 National Long-Term Care Survey with the purpose of: (1) examining the relationship between declines in elderly disability and health care utilization and costs, using Medicare claims data, (2) describing changes in the elderly's use of assistive devices for activities of daily living and instrumental activities of daily living, and (3) updating selected statistics reported in Older Americans 2000: Key Indicators of Well-Being.

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NATIONAL HOME AND HOSPICE CARE SURVEY (NHHCS)

PURPOSE: Because of the difference in views as to whether or not the homebound coverage requirement is being applied appropriately, it would be extremely useful to have measures of the homebound status of a sample of Medicare beneficiaries currently receiving services. The NHHCS is the only nationally representative survey that samples and collects descriptive data on all current users of home health services (including nonelderly as well as home health users age 65 and older) during the period when they are actually in a home health episode. Because over 70% of home health services are Medicare-financed, the sample of current patients is predominantly comprised of Medicare beneficiaries. The NHHCS Current Patient Survey includes descriptive information on users of home health services, including a number of potential indicators of "homebound" status. Additional information on indicators of homebound status may be obtained from the Outcome and Assessment Informal Set (OASIS) instruments where these were completed and are present in patients' files. Because CMS has announced its intention to mandate the use of the OASIS instrument to assess home health patients' care needs upon admission and health status outcomes at discharge or every 60 days when their continued need for home health services is recertified, many home health agencies have already begun using the OASIS instrument on a routine basis. It is therefore estimated that a high percentage of patients selected for the NHHCS Current Patient Survey will have completed OASIS instruments available. NCHS has agreed to include in the data collection for these patients a limited set of items from the OASIS. Although these data from the NHHCS will not be available in time to be incorporated into the BBA-mandated Report to Congress on alternative definitions of homebound status, we believe that it will be useful to be able to report to the Congress that HHS has established a mechanism for obtaining nationally representative data on the extent to which home health patients meet various indicators of "homebound" status.

FINDINGS/RESULTS: NCHS completed the work and has provided ASPE with a data file for analysis.

NATIONAL INITIATIVE TO IMPROVE THE RECRUITMENT AND RETENTION OF THE PARAPROFESSIONAL WORKFORCE IN LONG-TERM CARE

PURPOSE: The Office of Disability, Aging and Long-Term Care Policy has launched a special development initiative to address the critical shortage of paraprofessional workers across the full spectrum of long-term care settings. The project is a partnership between the Institute for the Future of Aging Services, a policy research center within the American Association of Homes and Services for the Aging, and the Paraprofessional Health Care Institute, a national nonprofit healthcare employment and advocacy organization. The project team will:

• Develop specifications for a new program of demonstration grants designed to bring about changes in provider practice and public policy that reduce high rates of vacancy and turnover among paraprofessional staff and improve the quality of their jobs.
• Design a public awareness strategy to increase public recognition of the role of the direct care worker in long-term care.
• Create a database of promising provider practices designed to improve worker recruitment, retention and job quality and related research and evaluation studies. The database will be accessible through the websites of the National Clearinghouse on the Direct Care Workforce, ASPE, and IFAS.
• Develop an applied research plan to investigate the nature, causes and impact of direct care workforce problems and support select studies of workforce issues. Initial studies include: an ethnographic study comparing workers who continue in the long-term care field for many years and workers who choose to leave; and the development of a concept paper specifying the requirements for modeling worker supply and demand.
• Prepare and disseminate three policy briefs on issues influencing the availability of direct care workers and the efficacy of policy interventions designed to reduce vacancies and turnover. The first policy brief will examine state "wage pass through" initiatives.
• Prepare and disseminate two working papers: (1) a synthesis of lessons learned from workforce related research and evaluation studies, public policy and regulatory initiatives and innovative provider and worker practices; and (2) a concept paper analyzing how workforce improvement must be taken into account in developing new models for promoting long-term care quality.

NATIONAL LONG-TERM CARE SURVEY

PURPOSE: The National Long-Term Care Survey (NLTCS) is the major source of information on the elderly persons with chronic disabilities. The survey has been administered in 1982, 1984, 1989, 1994, and 1999. The survey provides nationally representative data on the characteristics, service use and long-term care expenditures of the frail elderly living both in the community and in institutions. ASPE originated the NLTCS in 1982 and co-funded it with the Health Care Financing Administration (now the Centers for Medicare and Medicaid Services) as part of an overall long-term care data collection strategy. ASPE has continued to provide periodic funding since.

NATIONAL LONG-TERM CARE SURVEY: NEXT-OF-KIN SUPPLEMENT

PURPOSE: Under an ASPE-NIA Interagency Agreement, ASPE funds will be used to support a Next-of-Kin Supplemental Survey as part of the 1994 NLTCS. Approximately 4,800 persons who are selected for interviews under the 1994 NLTCS will have died between 1989 and 1994. The next-of-kin or other knowledgeable persons will be interviewed about the deceased person's use of medical and long-term care services. These data will become part of the 1994 NLTCS data set. ASPE funding will permit the survey to obtain information on an estimated 80% of decedents. The information on decedents is needed in order to make a number of important estimates, such as total long-term care costs and the extent to which nursing home residents spend-down to qualify for Medicaid benefits. Because the 1989 NLTCS did not contain a survey on decedents, it was not possible to generate an estimate of total nursing home and other long-term care service use for that survey population. A Next-of-Kin Survey on decedents will help remedy this problem.

NATIONAL RESOURCE CENTER ON HOME AND COMMUNITY-BASED SERVICES

PURPOSE: The purpose of this project is to develop and test the effectiveness of a National Consortium and Resource Center (NCRC) to improve access to consumer responsive home and community-based long-term care for people with disabilities of all ages. The long range purpose of such a center would be to foster long-term care policies and practices that: (1) assist in "leveling the playing field" between institutional and community-based models of long-term care; (2) provide consumers with more control over choosing the setting in which they receive long-term care; (3) expand the range of high quality consumer responsive residential options, personal assistance, other home and community-based supports and health related services available to people with significant mental and physical disabilities who wish to live in home and community-based settings; (4) promote parity and equity between the availability of institutional and home and community-based long-term care; (5) explore the potential for managed care organizations to utilize and expand consumer directed home and community care; and (6) support financing and delivery approaches to consumer responsive home and community-based services that enable states to manage and control their long-term care expenditures.

Approximately 13 million people of all ages have disabilities which impede their ability to carry out one or more of the routine activities of daily life. Slightly over half are over 65 years of age, the remainder are children and working age adults. The vast majority of the services and care available to these 13 million people is provided voluntarily by families. However, a significant number, mostly those persons who are significantly impaired, may have no family caregivers, and receive formal long-term care services that are largely publicly financed through state Medicaid programs. Barring a fundamental shift in public financing that few expect, the Medicaid program will continue to be the principal purchaser of public long-term care services well into the next century.

Several factors offer new opportunities and pose new dilemmas for long-term care policy and program development in the 21st century. Clearly, consumers, policy makers, and providers are experiencing some tensions in their relationships as a result of several of the above factors. The Department of Health and Human Services, along with several other federal agencies is committed to facilitating the development of a common agenda among the stakeholders in long-term care policy and program development at all levels, one that supports consumer decision making and choice.

NATIONAL STUDY OF ASSISTED LIVING FOR THE FRAIL ELDERLY

PURPOSE: "Assisted living" refers to residential settings for people with disabilities which combine both housing and personal assistance services within a homelike or noninstitutional environment. The number of assisted facilities nationally is not known; estimates range from 8,000 to 30,000. Similarly, estimates for the number of frail elderly and other persons residing in such facilities range from 350,000 to 1,000,000. This study will, among other things, generate a more reliable estimate of the number of these facilities and their residents. As assisted living options multiply, a challenge facing the federal and state governments is how to regulate such arrangements, balancing consumer protection concerns (especially if public funds reimburse costs) with resident rights for self-direction, taking risks and maintaining accustomed lifestyles.

The major purpose of this project is to analyze the role of assisted living within the current long-term care system from the perspective of consumers, owners/operators, workers, regulators, investors and other stakeholders, and to issue a report on its current status and future directions. The study will address several broad policy-relevant issues, including supply and demand trends; barriers; how closely practice parallels philosophy; the impact of key features on outcomes; and quality and accountability. The contractor will assist HHS and other federal agencies in the formulation of regulatory and financing policy options for assisted living. A Technical Advisory Group has been established to provide guidance to the contractor.

FINDINGS/RESULTS: As of 1998, there were approximately 11,500 facilities nationwide which met the study's definition of "assisted living facilities" (ALFs) with approximately 600,000 beds and 500,000 residents. The average bed size was 53. About 72 percent of facilities characterized themselves as "assisted living facilities." 55% of ALFs were freestanding; 45% were part of a multi-level campus (usually with a related nursing facility). Forty-one percent of ALFs in the survey met the study criteria for "high privacy," "high service," or both. On average, residents of ALFs are considerably less functionally disabled than nursing facility residents.

Most ALFs cannot guarantee "aging in place" to their residents because in most ALFs residents with severe functional dependencies (such as requiring help with transferring), those with cognitive impairment that progressed from mild to moderate to severe, as well as residents who exhibited behavioral problems would be discharged from the facility. The median base rate in the ALFs surveyed was $1800 per month, which is more than most elders can afford based on income alone; they would need to tap into their assets (which might well involve financing ALF costs through the sale of a home). Results from the discharge survey indicate that, on an annualized basis, approximately 8 percent of residents move to a nursing home and 4 percent move to some other residential care setting (such as another ALF). Residents of "low service" ALFs and those with significant cognitive impairments are more likely than residents of other ALFs or other residents in their facility to move to a nursing home. Surveys of current ALF residents found that residents generally felt that they were treated with respect, affection and dignity; however, they did report concerns about the adequacy of staffing levels and about high staff turnover.

NATURALLY OCCURING RETIREMENT COMMUNITIES (NORCs): IMPLICATIONS FOR AGING AND LONG-TERM CARE POLICY

PURPOSE: ASPE and AoA have an interest in the policy implications of fostering the NORC concept as a way of encouraging aging in place, supporting people at home and in the community, and conceivably forestalling unnecessary institutional acute or long-term care. The examination of these grantees will serve a dual purpose: to provide specific formative research on implementation issues associated with organizing services for NORCs, and to highlight broader policy implications of identifying and making use of the NORC concept as a way of organizing community-based care in response to an aging population.

O

OVERVIEW OF STATE LONG-TERM CARE REFORMS

PURPOSE: The purpose of this project is to provide a descriptive study for all 50 states that: (1) summarizes and synthesizes state long-term care reforms into a series of themes; (2) identifies the types of processes used by states to develop and implement their reforms; and (3) identifies the federal/state approvals and the financial and other resources necessary for implementation.

P

PATIENT HEALTH AND FUNCTIONAL INFORMATION REQUIREMENTS

PURPOSE: In this project, the perspectives of various policymakers and experts on the need for, expectations and feasibility of collecting health and functional assessment information that includes comparable data elements in a manner that minimizes provider burden. Specifically, policymakers and experts will be asked to:

• Identify and prioritize objectives/purposes/regulatory needs of collecting health and functional assessment information across a variety of Medicare benefits (e.g., acute in-patient hospital stays, post-acute care services, and other services).
• Consider the extent to which objectives are common across Medicare benefits and identify the types (domains) of information that may be needed across benefits to determine if these objectives have been achieved.
• Consider the applicability of information learned from this study to the provision in the Benefits Improvement and Protection Act (BIPA) of 2000 that requires HHS to submit, by January 2005, a report to Congress on the development of standard instruments for the assessment of health and functional status of Medicare beneficiaries.
• Discuss the PROs and CONs of various methods of collecting patient health and functional status information (e.g., freestanding hard copy or electronic patient assessment instruments, expansion of existing electronic data systems such as claims data, implementation of new automated data systems, etc.) and the alternative entities that could maintain that information (e.g., the government, providers, etc.).
• Identify how information technology could facilitate the use and applications of health and functional patient barriers to the use of such technology.

FINDINGS/RESULTS: Government and non-government stakeholder perspectives have been obtained on various Medicare program objectives for a wide variety of Medicare providers (e.g., acute in-patient hospital stays, post-acute care services, and other services). Generally, stakeholders agreed that patient health and functional information is/may be needed to support various payment systems. There were different opinions about the utility of patient health and functional information to measure quality. An initial framework was been developed that begins to frame the response to a series of questions that were asked when the project was initially awarded (e.g., what are the various services and purposes for which Medicare collects patient health and functional information; for which Medicare services would patient health and functional information be most useful and why; what are the various objectives of the government collecting this information; what types of data would be most useful to achieve specified objectives (e.g., summary scores vs. detailed assessment of signs and symptoms); can electronic information systems be used to increase the efficiency and accuracy of data collection, and if so, what is the most appropriate role for the Federal Government in this arena).

PERSONAL ASSISTANCE SERVICES "CASH AND COUNSELING" DEMONSTRATION/EVALUATION

PURPOSE: This project, which is being done in collaboration with the Robert Wood Johnson Foundation, will employ a classical experimental research design (i.e., random assignment of participants to treatment and control groups) to test the effects of "cashing out" Medicaid-funded personal assistance services for the disabled. The demonstration will include elderly as well as younger disabled consumers. Two states are expected to participate in the demonstration. In these States, control group members will receive "traditional" benefits--i.e., case managed home and community-based services, where payments for services are made to vendors--while treatment group members receive a monthly cash payment in an amount roughly equal to the cash value of the services 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 will be greater. Consumers are expected to purchase a somewhat different mix of disability-related services and/or assistive technologies when they make the decisions and payments themselves than when case managers contract with vendors on their behalf. It is also hypothesized that States will save Medicaid monies (mostly in administrative expenses) from cashing out benefits. The analysis will consider the effects of the demonstration according to the varying characteristics of the consumers including age, disability, gender, family support, and other factors.

FINDINGS/RESULTS: Early findings indicate very high satisfaction scores for treatment group participants in Arkansas. Per person per month spending for treatment vs. control group members in AR indicates that the experimental program is budget neutral. Spending for personal care services is higher for treatment group members but spending on all other Medicaid services is lower and, in particular, spending on institutional services (nursing facility and hospital care) is 18% lower for the experimental group members than for the control group members. No results are as yet available for New Jersey or Florida.

PLANNING STATE MEETINGS AND A NATIONAL CONFERENCE ON CONSUMER DIRECTED CARE

PURPOSE: The purpose of this project is to provide selected background materials and the logistics needed to plan and implement four state meetings and a 2-day national conference on consumer-directed models of care for people with disabilities and the elderly. DALTCP will collaborate with the Centers for Medicare and Medicaid Services, the Social Security Administration, and the Administration on Aging on this project.

The goal of the state meetings and the conference is to bring together researchers, practitioners and policymakers to identify future directions for policy development and research which promote effective and responsive consumer-directed services systems for the elderly and people with disabilities. The meetings and conference will educate policymakers and consumers at a state and national level about consumer directed models of care, by addressing the issues, concerns and policy barriers and opportunities that they identify. The audience that the meetings and conference will target include: state policymakers, congressional staff with jurisdiction over health care and taxation, state legislatures, state legislative staff, federal policymakers, consumers, and advocates--all of whom are critical to the expansion of consumer-directed personal assistance models.

POLICY IMPLICATIONS OF WELFARE REFORM: TECHNICAL ASSISTANCE TO STATES FOR SERVING PEOPLE WITH DISABILITIES UNDER TANF

PURPOSE: The Temporary Assistance to Needy Families (TANF) program, created through the Personal Responsibility and Work Opportunity and Reconciliation Act, allows States more flexibility in defining program parameters than was allowed under the former AFDC program, and places a stronger emphasis on participation in work and work-related activities. One of the groups that may be affected by this increased flexibility and stronger work emphasis are disabled recipients and caretakers of disabled recipients, who were previously exempt from participation requirements.

This project, jointly funded by the Office of the Assistant Secretary for Planning and Evaluation and the Social Security Administration, will collect and disseminate information on how states are implementing TANF and addressing issues that are relevant to persons with disabilities and/or their caretakers. The primary goal of the study is to provide information to States that is useful for helping them to either develop or refine their own programs serving persons with disabilities. The project has two main components: (1) a review of States' efforts to assist persons with disabilities and caretakers in preparing for, and participating in, work or work-related activities, and (2) a series of case studies of the more promising programs.

POLICY SIMULATIONS USING THE LONG-TERM CARE FINANCING MODEL

PURPOSE: The purpose of this project is to assist ASPE staff in using the Long-Term Care Financing Model (LTCFM), a microsimulation model developed with previous ASPE support to perform projections and policy simulations of the elderly's long-term care use and expenditures. This project will keep the model's assumptions and parameters updated as better and more recent data become available. The contractor will also assist ASPE staff in designing the base case simulation and various policy simulations, such as examining the impacts of disability trends, projecting the growth of private long-term care insurance (including the effects of tax incentives) examining the impacts of retirement income trends, and examining how long-term care may impact on Medicaid budgets and labor markets for nurses and paraprofessional. Other policy issues may be addressed with the model as ASPE's needs evolve over the course of this project.

PRESCRIPTION DRUGS AND PEOPLE WITH DISABILITIES: A PRIMER FOR DATA AND RESEARCH

PURPOSE: Analysis of the utilization and costs of prescription drug coverage for people with disabilities will help the Department better understand the needs of people with disabilities when debating a Medicare drug benefit and/or refining prospective payment systems for skilled nursing facilities. Previous research has focused almost exclusively on Medicare beneficiaries living in community settings; yet, beneficiaries who are in institutional settings (nursing homes, assisted living, and retirement homes) are very heavy utilizers of prescription drugs. This study will focus on the prescription drug needs of these populations and help the Department consider potential research and demonstration activities to enhance access to or quality of prescription drugs benefits in the future.

PRIMER FOR STATES AND CONSUMERS ON MEDICAID HOME AND COMMUNITY-BASED SERVICES

PURPOSE: An important priority of the White House, the Secretary and the Department of Health and Human Services is a reduction in the over-reliance on unnecessary institutional long-term care and an expansion of consumer responsive home and community-based long-term care options in the Medicaid program. As a step toward addressing this priority, ASPE proposes to develop a "primer" on existing long-term care options in Medicaid that promote choices in long-term care for consumers. The primer is 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.

PRIVATE PAYERS SERVING DISABLED INDIVIDUALS AND RESEARCH SYNTHESIS ON MANAGED CARE FOR PERSONS WITH DISABILITIES

PURPOSE: Medicare and Medicaid data have been used to analyze service use and expenditures of various subpopulations. Yet relatively little analysis has been performed on data from persons with disabilities or severe chronic conditions, and even less on those covered by employer-sponsored insurance plans. Such private sector plans play a key role in serving persons with disabilities or severe chronic conditions. This project investigates the choice of employer-sponsored insurance plans and use of services by persons with disabilities or severe chronic conditions. Three non-elderly populations are studied--active employees, their dependents, and early retirees.

A methodology was developed to identify persons with disabilities or severe chronic conditions by examining diagnoses from claims and encounter records of insurance plans. This methodology was applied to data from two large employers. Statistical analyses were performed to determine the factors affecting the choice of indemnity or managed care plans. The effect of managed care on service use and expenditures was estimated, after controlling for differences in plan casemix.

This project also examined the performance of several risk adjustment models using data from the two employers, using data on total plan expenditures, and also separately for mental health services. Such risk adjustment models may help employers and other payors compensate plans more appropriately for serving persons with disabilities or severe chronic conditions.

FINDINGS/RESULTS: Descriptive data on factors affecting plan choice and service utilization are presented in the final report. Although persons with disabilities or severe chronic conditions tended to be more likely to select the indemnity option, the relative prices charged for the indemnity and managed care options seemed to have a strong impact on plan choice.

R

RESEARCH ON EMPLOYMENT SUPPORTS FOR PEOPLE WITH DISABILITIES

PURPOSE: Employment rates for people with disabilities have remained low despite advances in legislation (especially the Americans with Disabilities Act), the availability of technology which can assist with everyday activities and work-related functions, and an increase in positive societal attitudes toward the integration of people with disabilities into mainstream social institutions. Only about 25 percent of people with significant disabilities between the ages of 16 and 64 are employed. Most of the policy research on the employment of people with disabilities has relied on statistical data from national surveys. Detailed information on individuals' experiences was needed. The goal of this project is to gather descriptive data about public and private sector employment programs, examining successful employment supports, and investigating factors that affect the ability of people with significant disabilities to work. Focus groups, examining the supports important to people with disabilities who are competitively employed, will be conducted in three cities. The products from this study will provide information to people with disabilities themselves and others interested in improving employment opportunities for people with significant disabilities.

REVIEW OF MENTAL HEALTH AND COGNITIVE IMPAIRMENT MEASURES IN SURVEYS

PURPOSE: The purpose of this project is to review survey elements for mental health and cognitive impairments that have been utilized in population-based national surveys. The project will: (1) review existing measures of mental disorders, cognitive or mental impairments--distinguishing diagnosis from impairment and symptomatology--for children and adolescents, working age adults, and the elderly to identify common elements and their purpose(s); (2) document the validity and reliability of the measures, as identified in currently existing sources, for the three age groups; (3) calculate the prevalence identified by the elements within the survey for working age adults and the elderly using appropriate methods; and (4) determine the associations of these elements with disabilities in activities of daily living, in instrumental activities of daily living and other selected disabilities.

S

STATE NURSE PRACTICE ACT REFORM PROJECT: NURSE DELEGATION/EXEMPTION TO PROMOTE CONSUMER DIRECTION

PURPOSE: As part of the 2001 Systems Change Initiative for Community Living, CMS awarded a grant to the CSHP at Rutgers University to implement a national technical assistance program called the Community Living Exchange Collaborative. ASPE intends to contribute additional funds to the 2002 CMS grant supplement specifically for the CSHP to provide technical assistance and design and conduct formative evaluations in 3-5 states that have recently implemented or are considering Nurse Practice Act reforms. The purpose of these reforms is to make it easier for Medicaid beneficiaries in need of frequent but routine skilled procedures to obtain such assistance both safely and cost-effectively in home and community-based settings.

STATE NURSING HOME QUALITY IMPROVEMENT EFFORTS

PURPOSE: The purpose of the project is to inform federal and state policymakers of some of the activities that have been undertaken by some states to improve the quality of nursing home care. The project will provide both a broad overview of the efforts undertaken by states and a more detailed description of state quality improvement activities in selected states. The project is intended to address the following research questions: (1) What are the characteristics of state initiated quality improvement programs? (2) What are the objectives of the state initiated quality improvement programs? Are all facilities or only some facilities targeted? What interventions do states employ? (3) How have states implemented the quality improvement program? (4) What is known about the effectiveness of the quality improvement program? In addition, the project will examine the term, concepts, and relationships embedded in existing quality measures in the domains of incontinence, pain, and pressure sores, and analyze their adequacy to measure quality.

STATE-INITIATED NURSING HOME STAFFING RATIO REQUIREMENTS

PURPOSE: The purpose of this project is to inform Federal and State policymakers of the status of state nursing home staffing ratio requirements in States that have either: (a) implemented or (b) established (but not yet implemented) nursing home nurse staffing ratios. The project will include a description of the following:

• Nurse staffing ratio requirements that have been established by various States.
• The issues States confront as they implement these requirements.
• The activities related to implementing nursing home nurse staffing (i.e., RN, LPN, and CNA) ratios.
• In those states that have implemented specific staffing ratios, each State's goals in establishing staffing ratios and the impact of these staffing requirements on quality and cost of nursing home care.

To address these issues the project will include the following activities:

• Establishment of a Technical Advisory Group to review project products.
• A literature review to identify states with nurse staffing ratios and to describe how the rules are being implemented.
• Discussions with key stakeholders and officials at the federal and state levels about issues around nurse staffing ratios.
• A review of state policies on nurse staffing ratios.
• A quantitative analysis of the impact of minimum nurse staffing ratios on nursing home quality in several states.

The final report will synthesize what is known, based on the literature review, quantitative analysis, and stakeholder discussions, about (1) state nurse staffing requirements and their implementation, (2) state variability around key issues such as the goals of staffing ratios and their calculation, and (3) the effects of state variation on the feasibility of establishing federal nurse staffing ratios.

STUDY OF FAIR HEARING ADAPTATIONS

PURPOSE: The purpose of this task order is to conduct a qualitative study that describes in detail selected aspects of four adaptations to the Medicaid Fair Hearing process for beneficiaries enrolled in managed care. The adaptions include evidentiary hearings, ombudsman programs, external review organizations and expedited review of appeals. Descriptive information will be gathered through case studies on the mechanics of each adaptation and the perceptions of state Medicaid staff, managed care organization administrators and advocacy organizations regarding issues related to their use by Medicaid beneficiaries. A policy meeting will be held to discuss the project's findings and the potential for using the findings to improve the Medicaid Fair Hearing process.

STUDY OF FINANCIAL EXPLOITATION OF ELDERS

PURPOSE: To respond to the 2000 reauthorization of the Older Americans Act, ASPE and AoA will co-fund an examination that will serve as an initial framework for Congress and the Department as each considers the policy implications of financial exploitation. Through a synthesis of the literature, through consultation with subject matter experts, and through field research, the project will: (1) Develop a conceptual framework that can guide an operational definition of financial exploitation of older people (within the larger context of elder abuse) to begin to describe reasonable expectations for recognizing and addressing it where it happens. (2) Begin considering a national estimate of prevalence. (3) Identify and describe effective policies and approaches to identification, prevention and intervention. (4) Recommend future directions in policy and research for the Congress, federal agencies, state legislatures and agencies, and other groups.

STUDY OF SCREENING AND ASSESSMENT IN TANF AND WELFARE TO WORK

PURPOSE: The Personal Responsibility and Work Opportunities Reconciliation Act (PRWORA) that created the Temporary Assistance for Needy Families (TANF) program allows states more flexibility in designing their cash assistance and welfare-to-work programs than previously provided. There is a general consensus that the significant caseload decline occurring since PRWORA's enactment has increased the share of the remaining caseload that is made up of recipients with significant barriers to employment.

This study, jointly funded with the Administration for Children and Families, will highlight critical issues in the development and use of screening and assessment tools designed to identify TANF and/or welfare-to-work (WtW) recipients who experience barriers to employment. The barriers of specific interest for this study include substance abuse, mental health or illness, physical/developmental disabilities (including learning disabilities), and domestic violence. The project will provide information about: (1) The screening and assessment tools used by experts in the field to identify each of the aforementioned barriers to employment; (2) The screening and assessment process states and localities are using to identify and serve the target populations and how and why the states chose particular screening and assessment tools; and (3) The linkage between screening and assessment and referral to services, and the types of coordinated services that are being provided to TANF/WtW recipients.

The contractor will conduct three main activities over the course of the project. First, the contractor will review screening and assessment tools used by states to identify TANF/WtW recipients with barriers to work and summarize and discuss the critical issues related to screening and assessment. A series of regional conferences will then be convened to provide an opportunity for federal, state, and local TANF/WtW staff to share information on screening and assessment. And finally, site visits will be conducted in 7-9 states to provide further information on how screening and assessment is being implemented and services provided. Information obtained through this study will be disseminated to states to allow them to help state and local officials develop and refine policies and practices regarding screening and assessment for barriers to employment, and the referral and coordination of related services.

STUDY OF TRENDS AND ISSUES IN THE NURSING HOME LIABILITY INSURANCE MARKET

PURPOSE: In the past few years, lawsuits against nursing homes have increased significantly, particularly in certain states, such as Florida and Texas. Both the number and average size of payments made to plaintiffs in these lawsuits, either through out-of-court settlements or through jury awards, have also increased dramatically. In most cases, settlement amounts and jury awards have been covered under liability insurance policies held by nursing homes and their parent corporations. The dramatic increase in liability losses in the nursing home industry has created considerable volatility in the nursing home liability insurance market. This volatility is evidenced by dramatic effects across the country--huge increases in premium costs, reduced coverage, many insurers electing to withdraw from the marketplace altogether, and some nursing homes finding it difficult or impossible to obtain liability coverage at all.

In September 2002, the Office of the Assistant Secretary for Planning and Evaluation (ASPE) in the Department of Health and Human Services awarded an 18-month contract to The Medstat Group to conduct a study of trends and issues in the nursing home liability insurance market. The purpose of the study will be to inform Federal and State policy makers, providers, insurers, and consumer groups about trends and issues concerning nursing home liability insurance, and to describe possible policy responses to this problem.

The study will include the following activities:

• A description of current trends and issues related to nursing home liability insurance through a review of published and unpublished literature, as well as discussions with key stakeholders.
• A detailed analysis of nursing home liability insurance issues in selected states through the conduct of in-depth case studies.
• A feasibility analysis of nursing home liability insurance data based upon the acquisition of information from nursing home providers and/or insurers/brokers on: (a) liability insurance coverage and costs; (b) liability losses incurred through lawsuit settlements and awards; and (c) nature of liability claims. The analysis will also assess the feasibility of linking nursing home liability insurance data with Medicare and Medicaid cost, quality, and payment data.

Study activities will be guided by a Technical Advisory Group comprised of individuals with expertise in nursing home liability insurance, nursing home litigation, nursing home quality measurement, and risk management. Stakeholders will include representatives from the nursing home industry, insurers, state insurance commissioners, consumer organizations, and the legal industry.

STUDY ON THE REGULATION OF HEALTH CARE

PURPOSE: The study will identify federal, state and other regulations that are specifically applicable to health care providers and will calculate the direct and indirect costs they impose. Phase I will include: (1) a literature search to determine what studies on this topic have been conducted; (2) all logistic and administrative aspects of planning for and implementing a planning conference with health care economists, lawyers, and other experts; (3) the development of a proposed study plan; and (4) preparation of paperwork for any clearances needed for Phase II of the study. The literature search will review what economic studies of regulations have been conducted, and, more specifically, identify the existing knowledge base on regulations affecting health care providers, and on the direct and indirect costs and benefits of these regulations.

SUPPORT FOR THE FEDERAL INTERAGENCY FORUM ON AGING-RELATED STATISTICS

PURPOSE: The Federal Interagency Forum on Aging-Related Statistics was established in 1986 by NIA in collaboration with NCHS and the Census Bureau. Staff from ASPE and other Departmental agencies became involved in the Forum shortly after it was established. The goals of the Forum were to provide federal agencies a venue for discussing aging-related data issues and concerns that cut across agency boundaries, facilitate the improvement of existing aging data bases and the development of new sources of information, improve the dissemination of information on aging-related research and data, and encourage cross-national research and data collection on population aging. In 1998, the Forum was reorganized and ASPE formally became one of nine principal members (the other members being NIA, NCHS, AoA, CMS, the Bureau of Labor Statistics, OMB and SSA). The explicit purpose of the "new" Interagency Forum on Aging-Related Statistics is to foster collaboration among federal agencies that produce or use statistical data on the older population. Specifically, the Forum seeks to identify information gaps and data inconsistencies in aging data, improve both the quality and use of data, and encourage cross-national research and data collection on population aging. This intra-agency agreement transfers funds from ASPE to NCHS to partially support the work of the Federal Interagency Forum on Aging-Related Statistics.

SYNTHESIS AND ANALYSIS OF MEDICARE HOSPICE BENEFITS

PURPOSE: The rapid rise in Medicare hospice expenditures, particularly on behalf of nursing home residents, has drawn the attention of a wide variety of health policy makers and the Office of the Inspector General (OIG). The OIG has made 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 policy makers as they consider alternative hospice benefit and payment designs.

FINDINGS/RESULTS: A report is available synthesizing the literature related to and summarizing discussions with key informants regarding the Medicare hospice benefit, particularly with respect to nursing home residents who elect this benefit. In addition, this report analyzes Medicare utilization and expenditures for beneficiaries electing the hospice benefit, analyzes and compares outcomes derived from the nursing home MDS data for decedents electing the hospice benefit with decedents not electing this benefit, and analyzes hospice coverage policy and utilization data from private insurers.

SYNTHESIS AND ANALYSIS OF MEDICARE POST-ACUTE CARE BENEFITS AND ALTERNATIVES

PURPOSE: This project synthesized what was known about: (a) coverage and payment policies for post-acute care (PAC); (b) predictors of PAC use and nonuse and of the type, amount, and duration of PAC use; (c) PAC utilization including characteristics of PAC patients, patterns of PAC utilization, and geographic distribution of providers; (d) Medicare expenditures during the course of PAC episodes; (e) outcomes of patients in and across PAC settings; and (f) state policies designed to maximize Medicare PAC coverage.

Medicare PAC services refer to a broad array of services provided in a variety of settings ranging from PPS-exempt hospitals to the home. "PAC providers" include SNFs, HHAs, and LTC and rehabilitation hospitals. In 1994, Medicare PAC expenditures were approximately $24 billion--up from only $3 billion in 1986. Such rapid cost increases have caused policy makers to focus considerable attention on these benefits and question the underlying reasons for these increases.

The review and synthesis of the literature will discuss any historical issues, the extent to which these issues remain, and any new issues that have emerged.

FINDINGS/RESULTS: Two reports have been produced:

The first report, Medicare's Post-Acute Care Benefits: Background, Trends, and Issues to be Faced, provides background on post-acute care expenditures and utilization, and Medicare policy changes that have contributed to these trends; the supply and changes in distribution of post-acute care providers; beneficiary, provider, and market characteristics associated with differential post-acute care provider use; and issues that need to be addressed regarding Medicare post-acute care services.

The second report, Interviews with Provider and Consumer Groups, and Researchers and Policy Analysts, summarizes discussions with key stakeholders regarding issues with Medicare's skilled nursing facility, home health, rehabilitation and long-term care hospital benefits. Many comments were raised regarding the impact of the changes enacted in the Balanced Budget Act on these benefits.

SYNTHESIS OF RESEARCH ON DISABILITY AND MANAGED CARE

PURPOSE: Since the mid-1990s, a number of research institutions initiated projects to assess how well disabled persons are cared for in managed care settings. The research focused on many different aspects of managed care and disability, and used a wide variety of research designs. The purpose of this project is to: (1) synthesize recent research on the performance of managed care plans in caring for persons with disabilities, (2) summarize research on current trends in enrollment of disabled persons into Medicaid managed care programs, (3) recommend areas for future research, and (4) convene a small research conference to explore the perspectives of other organizations sponsoring research in this area.

T

TRACKING OF HOME AND COMMUNITY-BASED CARE EXPANSION ACTIVITIES AND TARGETED TECHNICAL ASSISTANCE

PURPOSE: The purpose of this project is to support the development of programs and practices in states and communities that provide people with disabilities of all ages and their families a broader array of choices for meeting their long-term care needs. This project responds to a gradual but persistent shift in the characteristics and nature of the long-term care service delivery system--a shift from a system largely driven by the supply of providers and services to one that is responsive to consumer preferences.

U

UNDERSTANDING THE CONTRIBUTIONS OF MEDICARE AND MEDICAID TO THE CARE OF DUAL ELIGIBLES

PURPOSE: This project will assemble a multi-state database on all persons who were eligible for both Medicare and Medicaid at some point during 1999, and to use this database to perform analyses of the use of health and long-term care services by various population groups. The development of the Medicaid portion of the database is already underway. This project will link the Medicaid data with Medicare enrollment and claims data. Comparisons will also be made to Medicare beneficiaries who were not enrolled in Medicaid in 1999. Since a number of changes have occurred in recent years that have affected both Medicare and Medicaid long-term care services, comparisons will also be made to Medicare beneficiaries who were dual eligibles in 1996.

USING ADMINISTRATIVE DATA TO STUDY DISABILITY AND LONG-TERM CARE SERVICE USE

PURPOSE: The purpose of this project is to use two major sources of administrative data to analyze: (1) how the type and extent of disability among nursing home residents varies across states; (2) how nursing home residents who are Medicare beneficiaries use various Medicare services; and (3) how the probability of admission to a nursing home depends on personal and environmental characteristics, including the presence of specific chronic conditions. The first analysis will be completed using clinical assessment data on nearly all nursing home residents in the U.S. The remaining two analyses will be performed using a randomly selected 5% sample of Medicare beneficiaries, merged with any clinical assessments that have been collected for those individuals. These analyses will help us better understand the determinants of nursing home use, especially the interaction between community care and nursing home admission.

USING MSIS DATA FOR ANALYSIS OF MEDICAID LONG-TERM CARE AND MENTAL HEALTH EXPENDITURES

PURPOSE: The purpose of this project is to assess the accuracy and usefulness of the 1999 Medicaid Statistical Information System (MSIS) data by performing three analyses: (1) an analysis of the characteristics of Medicaid beneficiaries enrolled in managed care in all states; (2) an analysis of the characteristics of Medicaid beneficiaries using mental health services in one state, including the types of services that they use and program expenditures; and (3) an analysis of the characteristics of Medicaid beneficiaries who use long-term care services in three states, including the types of the services that they use and program expenditures. The accuracy of the data shall be determined by comparing them to existing sources of aggregate data on Medicaid program expenditures. The usefulness of the data shall be assessed in terms of their ability to describe enrollees in Medicaid managed care plans, and users of long-term care and mental health services, which cannot now be done with aggregate statistics.

Last revised: February 25, 2003

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