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.