U.S. Department of Health and Human ServicesU.S. Department of Health and Human Services
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This report was prepared by HHS's ASPE/DALTCP, in conjunction with a contract between DALTCP and Lisboa Associates. For additional information about this subject, you can visit the DALTCP home page at http://aspe.hhs.gov/_/office_specific/daltcp.cfm or contact the office at HHS/ASPE/DALTCP, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, S.W., Washington, D.C. 20201. The e-mail address is: webmaster.DALTCP@hhs.gov. The Project Officer was Nancy Eustis.
This package includes the Background Paper which was distributed at the Office of Disability, Aging and Long-Term Care Policy's "Expert" meeting and the Summary Paper of the meeting's discussion. The Background Paper also includes an Appendix describing national disability data bases. The opinions and views expressed in this package are those of the authors. They do not necessarily reflect the views of the Department of Health and Human Services, the contractor or any other funding organization.
This paper provides background information for a meeting on data sets containing information on health care and long-term supports for persons with disabilities. The primary purpose of the meeting was to inform the research agenda of the Office of Disability, Aging, and Long-Term Care (DALTCP). The meeting was hosted by DALTCP in the Office of the Assistant Secretary for Planning and Evaluation (ASPE) in Washington D.C. on March 31,1995.
We asked participants to assist us to:
Assess disability-related national data sets pertaining to health and long-term supports, particularly as related to the policy issues discussed below.
Identify useful State, area, private and international data bases, including data from large federally-assisted demonstrations of managed care, integrated health services, long-term care and welfare reform.
Identify next steps in analyzing available disability data.
Propose priorities for DALTCP's research agenda regarding disability data.
The paper begins with two general sections: Conceptual and Policy Framework and General Orientation to Disability Data, the latter of which contains an overview of the Disability Survey (1994-1995 Supplements to the National Health Interview Survey).
There follow sections which discuss policy and research questions ASPE/DALTCP is addressing and a critique of available data on four populations of persons with disabilities: working age adults; persons under age 18; older adults; and special populations.
The concluding section poses key questions in considering a disability data strategy and identifies possible next steps in developing a disability data strategy.
An Appendix provides one-page summaries of numerous national disability data bases.
There are many ways to define "disability". The definition should be broad enough to cover all persons of interest, yet detailed enough that policy makers and program administrators can identify the target groups they try to serve.
For this paper, we consider a disability to be a limitation of activity due to chronic conditions. Such a definition, which is used by the National Center for Health Statistics (NCHS), is "slanted" toward a health perspective. This is in keeping with the Department's mission, which--with the departure of the Social Security Administration (SSA)--is likely to place greater emphasis on health and long-term care policy as they affect persons with disabilities.
In the World Health Organization's (WHO) manual International Classification of Impairments, Disabilities and Handicaps (ICIDH) (1980), impairments represent disturbances at the organ level; disabilities reflect the consequences of impairment in terms of functional performance and activity by the individual; and handicaps are concerned with the disadvantages experienced by the individual as a result of impairments and disabilities. WHO is currently producing a revision and updating of this classification.
The starting point for this paper should not obscure the difficulty of reaching a broad consensus on one or more definitions of disability or identifying all the variables required to view disability from a variety of policy and program perspectives. In the process of developing a disability data strategy, the full range of conceptual, methodological and definitional issues around disability must be examined thoroughly.
According to the 1990 Survey of Income and Program Participation (SIPP), approximately 40.1 million Americans living in the community have one or more disabilities because of a physical or mental health condition. There are, in addition, about 2.6 million persons with disabilities who reside in institutions. This population is characterized in the first instance by its diversity. It includes the frail elderly, persons with mental retardation or other developmental disabilities (MR/DD), adults with physical disabilities or mental illness, children with disabilities and veterans. While the specific needs of these groups vary, they share common concerns and aspirations.
ASPE provides data and analyses to inform policies of the Department of Health and Human Services (DHHS). Within ASPE, DALTCP has a mandate from the Assistant Secretary to expand its research agenda on persons with disabilities of all ages, focusing on health services and long-term supports. We are conducting and planning a number of disability-related research projects.
In addition, we have responsibilities regarding policy-relevant national survey data, including adding specific questions or entire sections to ongoing surveys (e.g., National Long-Term Care Survey), reviewing surveys sponsored by agencies in the Department, and developing new surveys in cross-cutting areas such as the 1994-95 Disability Supplement to the National Health Interview Survey (NHIS).
Given the cross-cutting nature of disability issues, we are coordinating our work with other departments and agencies, including the Department of Education and the new independent SSA as well as with operating agencies in DHHS and within ASPE itself.
National programs affecting persons with disabilities have developed considerably over the past quarter century. Currently many of these programs are undergoing scrutiny within the Administration and in Congress. Policy-relevant data are needed in a number of areas. Major disability-related initiatives which would benefit from more current data and data analyses include the following:
President's Disability Policy Review
The White House has undertaken a broad review of Federal disability policy through a group chaired by Carol Rasco and Alice Rivlin. This group will review the direction of Federal disability policy and provide guidance for the next steps. Specific Work Groups include: Guiding Principles, Accommodations, Children's Issues, Employment of Working Age Adults, and School-to-Work Transition. Judy Feder and Robyn Stone of ASPE are convening the group on Children's Issues.
Children with Disabilities on SSI
Rapid growth in the number of children who are receiving Supplemental Security Income (SSI) because of a disability has generated concern and criticism at present. In consequence, a National Commission on Childhood Disability has been mandated by the 103rd Congress. See below.
Health Care Reform Initiatives
Access to health insurance is a major concern for persons with disabilities. States and private insurers are undertaking reform initiatives despite lack of a major Federal health reform initiative. Proposals for universal coverage and a ban on exemptions from coverage due to preexisting conditions offered great promise to persons with disabilities. However, this constituency has concerns about the consequences of managed care and various cost containment measures.
In ASPE's studies of the effect of managed care options on persons with disabilities--both children and adults--valid and reliable data have not been readily available.
Potential Changes in Medicare and Medicaid
Many States are using managed care plans to serve their Medicaid beneficiaries. While people with disabilities have for the most part been carved out of these initiatives, a number of States are beginning to enroll their SSI (aged and disabled) populations in managed care plans.
There is serious consideration of placing a cap on Federal Medicaid expenditures or turning the Medicaid program into a block grant. The Health Care Financing Administration (HCFA) expects a doubling of nonelderly disabled Medicare beneficiaries between 1980 and 2000. ASPE/DALTCP in conjunction with HCFA is examining changes in the Medicare home health benefit. In general, we need data to project consequences of different scenarios of changes in these major programs for persons with disabilities.
Long-Term Support Reform
Debate continues concerning the feasibility of a Federal program to provide block grants to States for home and community-based services, including personal assistance services (PAS), for persons with disabilities. Of particular interest are issues around consumer-directed services. Perhaps a more probable initiative is enactment of tax incentives for private long-term care insurance. Data are needed regarding who buys such insurance.
Also of interest regarding home and community-based services are criteria for assessing State service-delivery "infrastructures" and needs for technical assistance.
In addition, State Governments and the private sector are developing assisted living and other housing-with-services options. This gives added importance to information on the living arrangements of persons with disabilities, along with their preferences. Such information is needed on the disabled population as a whole and various subpopulations of persons with disabilities.
Welfare Reform Initiatives
Approximately one-third of women receiving Aid to Families with Dependent Children (AFDC) either have a disability, have a child with a disability or may reside with another adult with a disability (Adler, 1993). Furthermore, research reviewed by the Urban Institute (Acs and Loprest, 1994) gives some indication that women with disabilities (especially those with multiple disabilities) are less likely to exit from AFDC for paid employment within a year.
It is unclear the extent to which job training, if enacted as a part of welfare reform, will address the special needs of persons with disabilities. DALTCP has in progress an exploratory study of impacts on persons with disabilities of welfare reform initiatives in a small sample of States.
Assessment of the Americans with Disabilities Act
As reported in Federal Implementation of the Americans with Disabilities Act (ADA), 1991-94 (West, 1994), the potential of the ADA for defending the civil rights of persons with disabilities has only partially been realized. ASPE/DALTCP is particularly interested in access to health and housing facilities.
Our experience is that one cannot assume easy access to health institutions, even though many hospitals and clinics receive Federal support and therefore have been required by the Federal Rehabilitation Act to provide access. Accommodation of persons with disabilities in existing privately-owned rental housing is not directly addressed by the ADA. Documenting the impact of the ADA has special policy significance in today's political climate.
The Changing Federal Role: (A) Devolution; (B) Reinvention
A major theme of the current Congress is transferring responsibility for social programs to the States, generally by means of block grants. In the past there has been minimal Federal monitoring of who receives which benefits, and even less information about program impacts. For example, there are few data on which age groups receive services under the Social Services Block Grant.
Although an increased Federal awareness of disability is suggested by the ADA and the President's Disability Policy Review, implementation of block grants potentially for nutrition, welfare, and Medicaid programs may substantially deter any Federal effort to track impacts on persons with disabilities unless provisions for so doing are explicitly incorporated.
The Reinventing Government effort--that is making government "leaner"--has implications for disability data. In an era of diminishing resources, there is consideration of how to consolidate surveys, establish standards for data collection and better organize data collection responsibilities within agencies. Undertaking new data collection initiatives in this environment will require considerable justification.
The United States has a wide variety of data bases on persons with disabilities--national, State and private. The collection of data on persons with disabilities has made considerable progress over the past decade.
In the near future, data sets will become available that will shed light on the characteristics, service use, expenditures and sources of payment for many groups of persons with disabilities. Most notable is the Disability Survey, which is being administered as a supplement to the NHIS in 1994 and 1995. This survey will serve as the "work horse" of disability analyses for the foreseeable future.
Even with such promising developments, a number of data problems persist. The Department's experience in examining health and long-term care reform options highlighted some of these problems.
While much is known about the frail elderly and their use of services, relatively little is known about other groups of persons with disabilities such as children, working age adults and special populations (e.g., mentally ill, developmentally disabled) that cut across age groups.
Though not ideal, the activities of daily living (ADLs) provide reasonable measures of functioning for older persons with physical disabilities; however, we lack equivalent measures for persons with cognitive impairments or mental illness and for children regardless of their type of disability. Self-reported ADL status is inherently a "soft" measure of disability and one subject to a lot of variability in the short run.
More consistent policies on measures and data systems on persons with disabilities are needed. At the national level, the data systems are largely decentralized and there remain significant gaps in coverage. Improved coordination, planning and priority setting among Federal agencies are required to make possible the best analytic uses of the data bases.
There should be development of longitudinal data bases (including panel studies) on the general population with disabilities and special subpopulations.
Increased access is needed to subnational data bases, including State and local surveys, data from federally funded demonstration programs, and proprietary data systems.
There should be more frequent and routine linkage of survey data with administrative records such as Medicare, Medicaid, and Social Security.
Other specific recommendations for improving disability data collection include:
Routine inclusion of disability measures in ongoing national data collection systems (LaPlante in National Council on Disability, 1992, p.35).
In Federal statistical reports, tabulation of findings by disability along with other standard demographic variables (e.g., age, race and income) (LaPlante, ibid.).
Increased focus on gaining congressional support for expanded data gathering on disability (LaPlante, ibid.).
Reporting information in the Current Population Survey (CPS) on labor force participation by persons with disabilities every month rather than only in March as is now the practice of the Bureau of Labor Statistics (Yelin, 1992, p.157).
The 1994/95 Disability Survey, the most comprehensive national survey on disability ever undertaken in this country, will provide information on research and policy issues related to disability. It is the first exhaustive survey of disability since 1978 and the first ever to collect national population-based data on children with disabilities and persons with developmental disabilities.
Data from the 1994/95 Disability Survey will enable us to understand more about people with disabilities--their numbers, characteristics (e.g., demographic, socio-economic, health, participation in Federal programs), service use and expenditures, and aspects of their daily lives (housing, transportation, employment, personal assistance). Data from the survey are relevant to the following policy questions:
What are the characteristics of people with disabilities who rely on DHHS programs?
Why is growth in SSI and Social Security Disability Insurance (SSDI) enrollment (and the companion Medicaid and Medicare programs) and costs so high?
Why is employment among persons with disabilities so low and why do some people with the same disabilities work while others do not?
What is the extent of disability among children and why is SSI growth so high, what role do recent changes in SSI eligibility (i.e., Zebley Supreme Court decision, new childhood regulations, expanded mental impairment criteria) play?
How do persons with MR/DD access community services and what is the role of Medicaid?
How do access to health care, health care utilization, and public versus private health insurance coverage vary for people with disabilities?
What is the impact of racial/ethnic differences in disability?
The 1994/95 Disability Survey grew out of a coordinated interagency and inter-Departmental effort at DHHS to obtain timely and complete disability data.
Under an ASPE contract, Mathematica Policy Research, Inc. produced a design for a national survey of persons with MR/DD as well as detailed measures and data collection instruments. A supplement to the NHIS was proposed as the vehicle for the MR/DD survey. This work served as the foundation for a more comprehensive Disability Survey.
The questionnaire was extensively reviewed by the Federal disability community, advocacy groups, and academics. In addition, the questionnaire was voluntarily tested by people with disabilities and their families at the NCHS Cognitive Questionnaire Lab. Finally, a pretest involving 250 households was also conducted in the Washington, DC area.
The 1994/95 Disability Survey is actually a two-year supplement to the National Health Interview Survey (NHIS). The NHIS has been collecting information on the nation's health since 1957. Samples are huge. About 100,000 households representing 240,000 people in the civilian non-institutionalized population will be interviewed.
The 1994/95 Disability Survey has two parts or phases, each of which consist of personal interviews in respondents' homes. Phase I is administered to the 240,000 respondents selected in the NHIS sample. Phase I interviews began in January 1994 and will continue through December 1995. Phase I contains many in-depth disability measures, as well as information on severity, onset, duration, and disabling condition.
Phase I disability measures include standard limitation of activity measures and detailed measures of sensory impairments, functioning of specific body systems, six separate ADLs, six separate instrumental activities of daily living (IADLs), mental illness, assistive devices, childhood disability, and functioning for children under five. People with MR/DD (using the legislative definition) can also be identified.
Many disability measures are standard, while others--notably those on children, mental illness, and developmental disabilities--are new and were derived with this survey in mind. Besides information on disability, data on health care, demographic, socioeconomic, health insurance, and program characteristics of people with and without disabilities are also gathered in Phase I.
Phase II is administered about 6-9 months after Phase I to about 40,000 respondents with serious disabilities. Phase II began in the Fall 1994 and will end in Fall 1996. Phase II collects data on service use and expenditures, housing, long-term care services, home care, personal assistance, respite care, transportation, employment, accommodations, work history, vocational rehabilitation, relationships, family structure, family impact (for children) and child care (for children).
Information from the Disability Survey can be linked to administrative disability records at SSA and Medicare records at HCFA. Furthermore, while the Disability Survey is a one-time or snapshot survey, provisions can be made to follow respondents back and re-interview them for longitudinal studies. Final results could be released in early 1997 and preliminary results by early 1996.
In developing the long-term care proposal in the Health Security Act and defining a benefits package, analysts in ASPE and elsewhere lacked data about working age persons with disabilities and their use of services. We relied primarily on data from the National Long-Term Care Survey (NLTCS) and the model of service use and costs developed by Brookings and Lewin-VHI for projections of target populations and costs for persons aged 65 and over.
In general, we have limited data on working age persons with disabilities in regard to key DHHS policy concerns. These include:
Use and costs of PAS and related supports. Recent expert meetings confirmed our need for data on uses and costs of PAS and related supports (such as assistive technology or adaptations) and for certain basic health benefits such as maintenance rehabilitation.
Impacts of increased reliance on managed care on persons with disabilities. Managed care is a centerpiece of most reform initiatives being implemented by many States (e.g., for their Medicaid programs) and by private insurers. While managed care holds promise of providing, under one auspice, an array of needed services by persons with disabilities, persons with disabilities and their advocates express a number of fears and concerns about potential disadvantages of managed care. These center on access to and receipt of appropriate services.
There are few data to address key questions such as functional and demographic characteristics of persons with disabilities in managed care and the impact of managed care on access to needed services, affordability and costs, and on individual outcomes.
Incentives or barriers to employment of persons with disabilities. Incentives and barriers to work for persons with disabilities include access to health insurance and to long-term supports. ASPE/DALTCP has in progress research to determine what data are available on the use of PAS and of assistive technology by workers with disabilities to answer questions such as:
To what extent do employers provide for personal assistance in the work place or pay for assistive technology and other adaptations?
How persons with disabilities or parents of children with disabilities would be affected by proposed changes in the AFDC program. As mentioned above, ASPE/DALTCP is sponsoring exploratory telephone interviews with officials in five States which have undertaken welfare reform initiatives. In addition, ASPE is sponsoring an evaluation of State welfare reform initiatives. It is anticipated that data collection will include questions concerning AFDC recipients who have disabilities or who have children with disabilities.
Numerous Federal surveys collect disability data on the working age population (aged 18-64), but except for the 1994/95 Disability Survey, none focus primarily on disability. That was not always the case. SSA conducted the Surveys of Disability and Work every few years beginning in the early 1960s in order to measure the extent of disability in the working age population and to examine the experience of disabled workers on SSDI and their families. The last Survey of Disability and Work was conducted in 1978 and there are no plans to repeat the survey.
Nowadays, data sources include either special surveys on disability (like the 1994/95 Disability Survey) or the addition of disability questions on non-disability surveys. Besides the 1994/95 Disability Survey, the major sources of information on the entire working age population with disabilities include:
In addition, the Medicare Current Beneficiary Survey (MCBS) covers SSDI beneficiaries eligible for Medicare--a small but policy-relevant segment of the working age population with disabilities.
The sheer size of the working age population with disabilities is immense. Although disability rates are much lower among the working age population (13.7 percent) than among the elderly (54.8 percent), more people with disabilities are in their working years (21.1 million) than in their elderly years (17.1 million).
The working age population is not only large, but heterogeneous, and is in fact made up of many smaller groups, most of whom are too small to pick up in surveys. These small often policy relevant groups can be based on condition (i.e., mental retardation, mental illness, multiple sclerosis, spinal cord injury), type of impairment (i.e., mental, physical), program participation (i.e., SSDI, SSI, VA), onset (congenital, childhood, early or late adulthood), age, gender, and race. Only the 1994/95 Disability Survey with its huge samples can hope to gather data on many of these small groups.
There are crucial but unresolved definitional and measurement issues among the working age population. No equivalent severity measures and survey questions have been developed for physical versus mental impairments. The standard functioning questions based on ADLs and IADLs often break down. Since mental illness and mental retardation are major disabling conditions in this age group, this is a critical gap.
The relationship between functional disability and work is also not well understood. Some people with the same level and type of disability work while others do not. Besides disability, a host of other factors are important in the decision to begin or return to work. These can include occupation (i.e., sedentary, manual labor), educational attainment, and age (those in their 60s may wish to stop work and retire early).
A small but important segment of the working age population with disabilities are institutionalized (i.e., nursing homes, mental hospitals, prisons) or are homeless. Since few national surveys include this population and since the few surveys which focus on the institutionalized (i.e., the National Nursing Home Survey) have very small samples of the nonelderly, we know little about this group.
Most Federal disability programs focus on the nonelderly and many of these pertain to people in their working years. These programs have administrative records which, if linked to national population-based surveys, could strengthen and expand our knowledge. However, administrative data is often not linked for reasons of confidentiality or simply because no such considerations were made.
A major policy focus for this age group concerns issues relating to benefits for children under the Federal SSI program. In 1994, almost three times as many children received SSI benefits (approximately 900,000 children) as did in 1989. This dramatic growth in the SSI program and the changing characteristics of the children who participate--most notably a presumed increase in children with mental impairments--has caused scrutiny of the program by the Administration and the Congress.
By Congressional mandate, the National Commission on Childhood Disability is reviewing the SSI program and the needs of children with disabilities. ASPE/DALTCP has been involved in developing a research agenda for the Commission. In addition, ASPE and DALTCP staff are leading the task force on disability programs for children as part of the Administration's Disability Policy Review.
The Commission has authority to examine:
In addition the Commission's charge includes consideration of Federal health assistance programs for children and the interactions of SSI with other public medical, special education, and case management programs.
Our plans to date for generating information for the National Childhood Disability Commission include analysis of early data from the Disability Survey; a synthesis of SIPP, Census, and NHIS data, and studies of use of Medicaid-funded services by SSI recipients.
In addition to its work with the Commission and the Disability Policy Review, ASPE/DALTCP and other ASPE programs are undertaking a program of research on children with disabilities. Projects include analyzing use of Medicaid services by children with disabilities, examining managed care programs for children with disabilities, and describing the extent to which school systems meet requirements for provision of related services under the individuals with Disabilities Education Act by using Medicaid benefits.
More broadly, the "reinvention" of the Federal Government and the shift toward consolidating categorical programs, establishing block grants and capping expenditures for major programs (e.g., Medicaid) could have significant impacts on children with disabilities.
We recently awarded seven research grants for projects which make use of available data sets. These include State and local data bases. Topics include assessment of policy implications of alternative functional definitions, patterns of service use and costs within several States, interactions of the AFDC and SSI programs with regard to children with disabilities.
Little information exists on children with disabilities. The major sources of information are:
Program records from SSI and the special education programs also contain disability data.
It is difficult to measure disability in children-much more so than for adults. Furthermore, the younger the child, the harder it is to understand, articulate, and measure disability. In fact, disability is a very different concept for infants, toddlers, preschool children, school-age children, and adolescents. Whereas play is the usual activity for children aged 3-5 and attending school for those aged 5-17, the usual activity of infants and toddlers (growing, developing?) is unclear and hard to measure. The lack of standard measures meant that new questions needed to be created for the 1994/95 Disability Survey.
Although children constitute about a quarter of the population, national surveys often include few children with disabilities in their samples. This is because the prevalence of children with disabilities is small (about 6 or 7 percent of all children) and because major surveys like the SIPP and the CPS are really focused almost exclusively on adults (people aged 15+ or 16+).
For example, SIPP has collected data on children's disability since its inception, but none on children's SSI participation, because SSI receipt is in the core set of questions designed solely for adults. (This will be remedied starting with the 1996 SIPP.)
While longitudinal data are universally scarce for people with disabilities, their lack is especially crucial for children, who change much more rapidly than adults in regards to disability and everything else. Finally, children live in families. While data on a child's disability is crucial, we also need to know about his or her family and their characteristics in order to gain an accurate understanding of the issues.
While data on older adults with disabilities is more extensive than for other populations, there are significant gaps.
Modeling Service Use and Costs. Increases in the aging population, especially in numbers of persons over age 80 or 85 who are at greatest risk for needing health and long-term care services, dominates much debate over policies on older adults. A major emphasis of ASPE/DALTCP's recent work with regard to older adults has been modeling long-term care service use and costs by persons age 65 and older using primarily data from the NLTCS.
Use of the model greatly facilitated development and acceptance of the long-term care proposal for various health reform bills last year. We plan to extend this model to estimating acute care costs in order to project consequences for policy changes such as, for example, adding co-payments to Medicare home health benefits or increasing Medicare Part B premiums.
We would also expect to examine the impact of integrated acute and long-term care strategies on public and private expenditures. In addition, we propose to extend our capability to understand impacts within States of changing use and costs of acute and long-term services, using Census data, the NLTCS and the Disability Survey.
A key question is the extent to which increased life expectancy is accompanied by a longer period of disability and chronic illness. There is some evidence from earlier rounds of the NLTCS that the prevalence of disability among the elderly is decreasing. Data from the 1994 NLTCS may provide further assessment of these trends.
Changes in Medicare Home Health Care Benefits. Medicare home health and skilled nursing facility expenditures have quadrupled in the past five years, from $2 billion to over $8 billion. We are undertaking research in collaboration With the Health Resources and Services Administration (HRSA) and HCFA to understand the nature of these increases and the extent to which Medicare home health benefits are changing from a post-acute care step down benefit into a source of long-term custodial care for the elderly.
We also hope to link the Medicaid Statistical Information Systems data set with the MCBS to examine the mix of skilled and custodial home care benefits by persons dually eligible for Medicare and Medicaid.
Subacute Care. Subacute care--i.e., comprehensive, specialized services provided in settings other than hospitals--has emerged as a policy concern for both the Medicare and Medicaid programs and to those involved in health reform. We are attempting to describe use of subacute care in both fee-for-service and managed care settings and its effects on acute (i.e., hospital) and other traditional post acute services. Expected and achieved outcomes are also at issue. At this point data for such analyses are limited, so that we are undertaking case studies of four market areas.
Long-Term Care Insurance. A key proposal of long-term care reform--incentives for private long-term care insurance--continues to be of interest to Congress and may be pursued separately from other health reform proposals. As noted above, data are lacking on the availability, coverage and use of such insurance. We are particularly interested in assessing the impact of State regulation on the affordability and quality of, as well as consumer satisfaction with various long-term care insurance products.
Housing with Services. As the long-term care system evolves, more emphasis is being placed on combining housing and PAS for the frail elderly in community settings. We are interested in examining a variety of housing with services options, including board and care homes, assisted living facilities, continuing care retirement communities and others.
There is a need for current and comprehensive data on such places in order to determine their appropriate role in the long-term care system.
International Comparisons. ASPE has undertaken a project to strengthen collection, analyses and dissemination of comparable data about long-term care in Japan and the United States. This work involves collaboration with HRSA and the Leadership Center for Longevity and Society at Mount Sinai Medical Center. ASPE provides support for analyses of informal caregiving in several industrialized societies.
Other international efforts are underway as well, including working with WHO on the revision of the ICIDH, with special attention to how it affects disability policy.
ASPE also participates actively in the International Collaborative Effort (ICE) on Aging, sponsored by NCHS. For example, in one project on the outcomes of nursing home care in five countries, the ICE on Aging researchers have highlighted the need for improved measurement and data collection comparability among nations (Van Nostrand et al., 1993).
The major sources of data on the frail elderly include the NLTCS (1 982, 1984 and 1989), the Longitudinal Study of Aging, the Asset and Health Dynamics of the Elderly Survey and the MCBS. The elderly are included in most general purpose surveys like NHIS and SIPP, but sample sizes for the frail elderly--especially those at advanced ages--are typically small.
For purposes of determining disability status among the elderly, surveys tend to focus on the ability of respondents to carry out ADLs and IADLs. However, operational measures of these activities vary widely across surveys. There are discrepancies regarding the sources of assistance; some measures focus on active personal assistance, others include standby or supervisory assistance and still others cover assistive devices. The lack of consistent measures has contributed to a wide range of estimates of size of the frail elderly population.
Measures of cognitive disability have not kept pace with the measurement of physical disability. This is a major concern, in light of the policy focus on persons with Alzheimer's Disease and related dementias.
Existing sampling frames are inadequate for accurately and efficiently identifying places where frail elderly persons reside. The growth of housing with services options means that elderly persons with disabilities can live in places other than their own home or a nursing home. These alternative living arrangements include board and care homes, assisted living facilities, continuing care retirement communities and other related group living arrangements.
The Census Bureau classifies places as households or group quarters, the latter being subdivided into institutional and non-institutional group quarters. Unfortunately, this classification means that assisted living facilities and similar arrangements can show up in any or all of these categories. This makes screening and sampling extremely expensive and inefficient.
Other problems include small sample sizes for persons aged 85 or over, inadequate coverage of minority elderly, insufficient geographic detail, obstacles to administrative record linkages, and paucity of longitudinal data for measuring transitions in old age. Most critically, we lack an appropriate conceptual framework with corresponding measures to study disability across the lifespan.
In general, it is important to note that proposed cutbacks in the SSI program, State and private health reform initiatives, and potential changes in Medicare and Medicaid are all policy issues which affect special populations of persons with disabilities. In addition, racial, ethnic, and gender differences in service needs and use are increasingly important variables in designing programs, given the increasing heterogeneity of the U.S. population and increased incidence of disability among minority populations.
An issue regarding special populations which is of particular concern to ASPE/DALTCP is how well persons with serious mental illness or mental retardation are served by a "generic" system of home and community-based services. For example, ASPE/DALTCP is proposing to convene a meeting to address the long-term care needs of persons with developmental disabilities involving mental retardation and whether they are best served by separation from or integration with other long-term care programs.
One interesting concept involves identifying tracer "conditions", whereby persons with particular disabilities--especially the more rare populations--could be tracked in terms' of service use, expenditures and payment sources.
Eligibility determination for a system serving multiple populations is a particular issue. For example, persons with serious mental illness are concerned not only about selfcare functions but also with functioning in social and recreational settings as well as at work. This population is also concerned that bureaucratic gatekeeping based on ADL impairments would not offer eligibility to needed services for them.
Further, persons with mental illness often have periods of relative good health and functioning but argue that continued access to long-term supports during these times would be cost-effective in that health would be sustained over longer periods with supervision and other supports. The MR/DD population tends to need supervision or cuing to perform ADLs, as well as help with IADLs. Hence eligibility based on need for hands on help with self care activities is inappropriate.
A focus of the President's Disability Policy Review is the transition of young adults from school to work. Various policies and programs have an impact on readiness to work of a young adult with disabilities including not only special education interventions and the availability of suitable employment but also access to health insurance and needed personal assistance and assistive devices.
Other special populations, e.g., persons with mental illness or developmental disabilities, are also concerned with linkages between long-term supports and social, recreational, and work settings.
In light of a variety of policy and program concerns, data needs on special populations can be grouped into four categories: (a) prevalence data for the population as a whole and major subgroups; (b) data on socioeconomic status, health status, functioning and related demographic characteristics; (c) data on service use, service needs, service costs; and, (d) data on developments over time for special populations as they move from childhood to adulthood to old age.
Special populations with certain disabilities (e.g., MR/DD) are rare in the population as a whole, though they are significant from a policy perspective. Existing surveys often fail to include measures for identifying them. There are three nationally representative surveys with some information about special populations: SIPP, NHIS and NMES.
For some special populations, e.g., persons with developmental disabilities, there also exist State surveys and narrowly focused studies, covering participation in selected programs or particular living arrangements (such as large residential facilities). All are able to shed some light on special populations.
The principal limitations across the three national surveys include:
Inadequate flexibility in the data to distinguish between mild and moderate disability from severe disability.
Focus on Federal program participation rather than comprehensive coverage of individuals' service needs.
Insufficient coverage of nonmedical family and community-based services, such as day care, supported employment, crisis intervention, assisted living and case management.
Small or non-representative sample sizes.
In addition, NHIS and SIPP are limited to the non-institutional population, with SIPP beginning with respondents age 15 and over. NMES included persons in facilities, but tended to exclude those in small community-based residential settings.
More narrow surveys and studies provide a rich source of information about special populations. However, without a clear idea of the representativeness of the persons included in these studies, it is not possible to put the findings in context.
The Disability Survey, which is being administered as a supplement to the NHIS over a two year period, will go a long way toward remedying many of these concerns (though, as noted, it is household-based and excludes institutions).
In developing a disability data strategy that meets ASPE's specific policy research agenda and at the same time serves the interests of the research community more broadly, a number of questions suggest themselves.
Content
What are the relative priorities on collecting data at the level of:
specific programs?
Is there a need for a "minimum data set" of disability-related data elements that are routinely collected?
Coverage
Since many major national surveys cover only the civilian noninstitutionalized population, how can coverage be extended to persons in institutions, persons in the armed forces and persons living abroad as part of an overall disability data strategy?
Should a higher priority be given in the future to separate disability surveys or inclusion of standard disability measures in existing surveys?
What would be needed to assure that standard disability measures are included in existing or planned surveys?
Sampling
How can existing sampling frames, which are built around housing units and group quarters (institutional and non-institutional), be changed to identify more easily persons with disabilities who live in alternative housing arrangements (assisted living facilities, board and care homes, independent living facilities, etc.)?
What are the key policy-relevant subgroups of persons with disabilities, for which sufficient sample sizes are needed for accurate estimation along critical dimensions?
What strategies are needed to assure representativeness of key disability-related subgroups in sample surveys?
Periodicity
What can be done to collect data on persons with disabilities on a more regular and predictable basis?
Given budgetary realities, should the emphasis be on one time or occasional surveys that collect a lot of data or more regular and frequent surveys that collect fewer data?
In light of budgetary realties, what relative priority should be given to: (a) longitudinal surveys, (b) panel surveys, and (c) cross-sectional surveys?
Access
What can be done to assure the timely production of useful and widely available public use tapes?
Administrative Records
What can be done to improve access to administrative records and link them to national survey data?
Subnational and International Estimation
To what extent should Federal resources be expended to generate estimates at the State and sub-State level on the prevalence, incidence and types of disability?
What role should the Federal Government, DHHS and ASPE play in promoting State and subState data collection on disability?
What role should the Federal Government, DHHS and ASPE play in fostering expansion and comparability in international data collection and coding (i.e., ICIDH) on disability?
Modeling
How can microsimulation models on financing and personal assistance services for persons with disabilities be developed and what would be the critical features of such models?
The following is a list of potential next steps for ASPE that could help articulate and support a policy relevant disability-related data strategy.
Exploration of accessing data from demonstrations and waiver programs (e.g., 1115 waivers) for analysis, with emphasis on the methodological and cost implications of this approach for related data collection.
Provision of technical assistance to States in their disability-related data collection efforts.
Support for expanded analyses of existing disability-related data by researches and policy analysts.
Encouragement of linkages of administrative records to survey data.
Promotion of the use of disability measures; in general, purpose surveys to help monitor the impact of new policies and programs (e.g., block grants) on persons with disabilities.
Hosting of a disability data conference, resulting in proceedings, special issue of a journal and/or a book.
Establishment of a Federal interagency coordinating body on disability statistics (analogous to the Federal Interagency Forum on Aging Related Statistics).
Acs, G. and P. Loprest. Do Disabilities Inhibit Exits from AFDC? Washington, D.C.: Urban Institute, August 1994.
Adler, Michele. "The Future of SIPP for Analyzing Disability and Health", Journal of Economic and Social Measurement, 18 (1992) 91-124, IOS Press. [http://aspe.hhs.gov/daltcp/reports/sipp.htm]
Adler, Michele. "Federal Disability Data: Creating a Structure in the 1990s to Further the Goals of the ADA"; National Council on Disability Conference presentation, December 1992. [http://aspe.hhs.gov/daltcp/reports/feddd.htm]
Adler, Michele. "Disability Among Women on AFDC: An Issue Revisited". Proceedings of the American Statistical Association. Alexandria, Virginia: American Statistical Association, 1993. [http://aspe.hhs.gov/daltcp/reports/afdcwomn.htm]
Adler, Michele. "Disability Among Children"; ASPE Research Note, January 1995. [http://aspe.hhs.gov/daltcp/reports/rn10.htm]
Adler, Michele. "Population Estimates of Disability and Long-Term Care"; ASPE Research Note, February 1995. [http://aspe.hhs.gov/daltcp/reports/rn11.htm]
Batavia, A.I., G. DeJong, and L.B. McKnew. "Toward a National Personal Assistance Program: The Independent Living Model of Long-Term Care for Persons with Disabilities." Journal of Health Politics, Policy and Law. Vol. 16, No.3. Fall 1991. Pages 523-545.
Freedman, Vicki A. and Beth J. Soldo, ed. Forecasting Old-Age Disability--Workshop Summary. Washington, D.C.: National Academy Press, 1994.
National Council on Disability. Furthering the Goals of the Americans with Disabilities Act Through Disability Policy Research in the 1990s: Summary of Proceedings. Washington, DC: Walcoff and Associates, December 7-9,1992. See summary of paper by Mitchell LaPlante, Ph.D., "Assessing the Impact of the Americans with Disabilities Act", p. 35.
Ries P. and S. Brown. "Disability and Health: Characteristics of Persons by Limitation of Activity and Assessed Health Status, United States 1984-1988." Advance Data from Vital and Health Statistics, No. 197. Hyattsville, MD: NCHS, 1991.
Van Nostrand, Joan F., Robert F. Clark, and Tor Inge Romoren. "Nursing Home Care in Five Nations." Ageing International (Journal of the International Federation on Ageing), Vol. XX, No. 2, June 1993, pp. 1-5. [http://aspe.hhs.gov/daltcp/reports/nh5nates.htm]
West, Jane. Federal Implementation of the Americans with Disabilities Act, 1991-1994. Milbank Memorial Fund, 1994.
Yellin, Edward H. Disability and the Displaced Worker. New Brunswick, NJ: Rutgers University Press, 1992.
| American Housing Survey (AHS) | |
|---|---|
| Contact | HUD User (800) 245-2691 |
| Sponsor | Division of Housing and Demographic Analysis, Office of Policy Development and Research, Department of Housing and Urban Development |
| Frequency | National survey conducted in 1973-1981, 1983, 19850 1987, 1989, 1991, 1993, 1995; metropolitan survey conducted annually since 1974. |
| Purpose | To provide a current series of information on the quality and quantity of the housing stock in America, as well the characteristics of its occupants. |
| Design | There are two components of the American Housing Survey: a national sample and rotating samples of metropolitan areas. Initial sample of housing units was drawn in 1973 and partly replaced in 1964 and 1994; updated continuously. Data collected through interview of unit occupants, or if vacant, informed persons such as landlords, rental agents, neighbors. |
| Content | Housing costs, physical condition and age of the unit, utilities used, residential mobility, neighborhood services available to residents, and needed housing improvements. Detailed demographic and income data are collected for household members. |
| Disability Measures | Health/disability status is not generally in the survey; although in the 1978 national survey and 1979-82 metropolitan survey there were special supplements containing disability data. The supplements included questions on difficulty getting around, health conditions causing difficulty, and housing modifications needed. |
| Coverage | Housing units from urban and rural areas. |
| Sample | Approximately 56,000 units in the national survey. Also samples 44 metropolitan areas throughout the U.S. on a four year cycle (11 areas annually). |
| Products | Public use data tapes, publications, CD-ROM. |
| Future | Ongoing |
| Comments | Data collection focuses on housing units, as well as individuals and families in the units. Survey regularly goes back to the same home to measure change. |
| Asset and Health Dynamics Among the Oldest Old (AHEAD) | |
|---|---|
| Contact | F. Thomas Juster, University of Michigan (313) 764-4207 Willard Rodgers, University of Michigan (313) 763-6623 Beth Soldo, Georgetown University (202) 687-6805 |
| Sponsor | National Institute on Aging |
| Frequency | 1993, with biannual follow-ups for all respondents |
| Purpose | Monitor transitions in physical and cognitive capacity in advanced old age; relate changes in health and economic resources to intergenerational transfers; examine the relationship of late life changes in physical and cognitive health patterns. |
| Design | Piggybacking on Health and Retirement Survey (HRS) screening of 70,000 households; supplemental sample of 80+ from Master Enrollment File (HCFA); computer-assisted personal interviews (CAPI) for those 80+, computer assisted telephone interviews for those 70-79. |
| Content | Physical and cognitive health, economic status, family structure, demographics, housing, service use. |
| Disability Measures | ADLs, IADLs, use of devices, personal assistance, financial management abilities; tests of memory and acuity, Wechsler Adult Intelligence Scale, Dementia Test; quality of life scale, depression diagnosis and treatment; condition list. |
| Coverage | Sample from screen within Health and Retirement Study as well as the HCFA Master Enrollment File; civilian non-institutionalized population. |
| Sample | 8,200 respondents age 70+; 2300 age 80+; oversamples African Americans and Florida residents. |
| Products | Public use data tapes; wave I data currently available. |
| Future | Proposed continuation of the survey from 1995-1999. |
| Comments | Detailed ADL questions: if get help, how often, which devices are used, if have difficulty. |
| Health and Retirement Survey | |
|---|---|
| Contact | F. Thomas Juster, University of Michigan (313) 764-4207 |
| Sponsor | National Institute on Aging |
| Frequency | 1992, re-interviews in 1994. |
| Purpose | To look at factors that affect the age at which people retire and the evolution of health and economic status during retirement. |
| Design | Baseline study in 1992, face-to-face interviews (6% by telephone); follow-ups by mail/phone every second year for twelve years. |
| Content | Health and cognitive conditions, retirement plans, attitudes and perspectives, family structure and transfers, employment status and job history, disability, demographics, housing, mobility, income, wealth, health insurance, and pension plans. |
| Disability Measures | Physical and cognitive functioning, physiological measurements of health and functioning, chronic conditions, job-related limitations, employment history, welfare disability applications, SSDI application, and benefits received. |
| Coverage | Wave I interviews of persons born between 1-1-31 and 12-31-41 and their spouses. |
| Sample | 7,600 households (12,600 persons). |
| Products | Preliminary data tape of Wave I is currently available, more complete data available in early 1995; data from Wave II available in spring of 1995. |
| Future | Proposed continuation of the survey from 1995-1999, with possible introduction of a new cohort in 1998. |
| Comments | |
| Current Population Survey (CPS); 1981-1993 March Supplements | |
|---|---|
| Contact | Jack McNeil (301) 763-8300 |
| Sponsor | Bureau of the Census for Department of Labor's Bureau of Labor Statistics |
| Frequency | Monthly since 1942 |
| Purpose | To obtain data on employment and unemployment. |
| Design | Longitudinal. Nine waves of interviews are conducted at four month intervals over a 30 month period for each panel. There is a standard core interview supplemented by periodic topical modules. All disability measures are found on selected topical modules. |
| Content | Monthly data on demographic and employment characteristics, with a March supplement on work disability, health insurance and program participation. |
| Disability Measures | Work disability for persons aged fifteen and older (prevented or limited in work, left job for health reasons, under age 65 and receiving Medicare or SSI, receipt of SSDI). |
| Coverage | Civilian non-institutionalized population. |
| Sample | Approximately 50,000 households annually. |
| Products | Publications, public use data tapes. |
| Future | Redesign for 1995 is underway. |
| Comments | |
| Decennial Census | |
|---|---|
| Contact | Jack McNeil (301) 763-8300 |
| Sponsor | Bureau of the Census |
| Frequency | Every ten years since 1790 |
| Purpose | To provide a basis for reapportioning seats in the U.S. House of Representatives. |
| Design | Every dwelling in the country receives either the short form with basic population and housing questions. A sample of 17% of households gets the longer form with additional questions, including those related to disability. The disability questions are about the ability to work, mobility, and self-care limitations. These questions are asked of the adult population aged 15 and over, and proxies may be used to answer these questions. |
| Content | Basic demographic and housing characteristics of the population. |
| Disability Measures | Persons are asked if they have a physical, mental, or other condition for at least six months that limits their ability to work or entirely prevents them from working, difficulty With activities such as going outside or shopping, and difficulty taking care of their personal needs. |
| Coverage | Households; Group Quarters - institutional and non-institutional. |
| Sample | All U.S. households. |
| Products | Books, Tables, CD-ROM, Diskettes, Public Use Tapes. |
| Future | Plans for Year 2000 in progress. |
| Comments | |
| 1994/95 Disability Supplement to the National Health Interview Survey | |
|---|---|
| Contact | Michele Adler, DHHS/ASPE (202) 690-6443 |
| Sponsor | National Center for Health Statistics |
| Purpose | To provide information on research and policy issues related to disability, including the prevalence of disability, the characteristics of people with disabilities (e.g., demographic, socioeconomic, health, participation in Federal programs), their service use and expenditures, and aspects of their daily lives (housing, transportation, employment, personal assistance). |
| Design | Personal interviews and self-reports. Phase I (January 1994-December 1995) is asked along with the core interview given to the 240,000 NHIS respondents. Phase II (Fall 1994-Fall 1996) is administered about six months after Phase I to about 40,000 respondents with serious disabilities. Data linkages with SSA and Medicare records can also be made. |
| Content | Phase I collects data on the prevalence, severity, type, duration, and disabling conditions; the health care, demographic, socioeconomic, health insurance, and program characteristics of people with and without disabilities. Phase II collects data on service use and expenditures and aspects of daily life (housing, long-term care services, home care, personal assistance, respite care, transportation, employment, accommodations, work history, vocational rehabilitation, relationships, family structure, family impact and child care). |
| Disability Measures | Disability measures in Phase I include standard limitation of activity measures and detailed measures of sensory impairments, functioning of specific body systems, six separate ADLs, six separate IADLs, mental illness, assistive devices, childhood disability, and functioning for children under five. People with mental retardation and other developmental disabilities (using the legislative definition) can also be identified. |
| Coverage | Civilian non-institutionalized population. |
| Sample | 100,000 households or 240,000 over two years. |
| Products | Public-use tapes/publications (late 1995-1997). |
| Comments | |
| Epidemiologic Catchment Area Study (ECA) | |
|---|---|
| Contact | William Narrow (301) 443-3774 |
| Sponsor | National Institute of Mental Health |
| Frequency | One-time. |
| Purpose | To assess the prevalence of mental and addictive disorders and to estimate service use. |
| Design | Face-to-face interviews done twelve months apart (waves I and II); telephone interview (face-to-face in CT) six months after wave I; institutional residents interviewed in waves I and II only--no telephone interview, use of Diagnostic Interview Schedule (DIS). |
| Content | Use of health services: ambulatory specialty mental and addictive, general medical, and human services, as well as admissions to hospitals and residential treatment centers; diagnostic data. |
| Disability Measures | Receipt of disability compensation; having to give up regular activities; diagnosis of mental illness; symptoms used as indication of impairment; unable or limited in work because of emotional or mental impairment. |
| Coverage | Household and institutional residents aged 18 years and over in five areas: New Haven, CT; Baltimore, MD; Durham, NC; St. Louis, MO; and Los Angeles, CA. |
| Sample | 18,571 (household); 2,290 (institutional). |
| Products | National Technical Information System (NTIS) is contact for public use tapes; NIMH has list of 400+ publications. |
| Future | Ten year follow-up being conducted at Baltimore site; mortality follow-up at New Haven site. |
| Comments | |
| Longitudinal Study of Aging (LSOA I and II) | |
|---|---|
| Contact | Julie Dawson Weeks, NCHS (301) 436-5979 |
| Sponsor | National Center for Health Statistics, National Institute on Aging |
| Frequency | Baseline survey in 1984, and followup waves in 1988, 1988, 1990. LSOA II followup interviews will be conducted every two years starting 1996. |
| Purpose | To measure change in health status, physical functioning and living arrangements, including movement into and out of institutions, among a cohort of older Americans as they move into and through the oldest ages. |
| Design | LSOA I baseline data is from the 1964 Supplement on Aging; LSOA II repeats the study with a new cohort from the 1994 NHIS core questionnaire, the 1994 Disability Supplement and SOA II. Personal interview at baseline, telephone interview at followup. |
| Content | Information on key activities (NAGI, ADLs, IADLs), helpers, living arrangements, nursing homes use, health insurance, family support, and self-perceived health status obtained in all waves. Information on basic demographic characteristics, work history, conditions and impairments, community services, income and assets obtained at baseline. |
| Disability Measures | Questions on difficulty performing seven ADLs, six IADLs, and NAGI; help in performing ADLs and IADLs. Also questions on impairment, health related retirement, and prevalence of disabling health conditions. |
| Coverage | Civilian non-institutionalized persons age 70+. |
| Sample | 7,541 elderly persons. |
| Products | Public use tapes, CD-ROM, NDI/Medicare disk updates, publications. |
| Future | Original LSOA interviewing ended in 1990, but there will be ongoing record linking. Update on cause of death and Medicare coming in 1995. For LSOA II three follow-back waves will be conducted at two year intervals starting in 1996. |
| Comments | |
| Medical Exam Study | |
|---|---|
| Contact | Martynas Ycas (202) 282-7089 |
| Sponsor | Social Security Administration |
| Frequency | 1996 |
| Purpose | To determine the distribution of persons with physical disabilities and mental impairments in terms of Social Security standards. |
| Design | Personal interview. |
| Content | To be determined. |
| Disability Measures | Measures of physical disability and mental impairments. Specifics yet to be determined. |
| Coverage | National household population age 18 to 69. |
| Sample | To be determined. |
| Products | To be determined. |
| Future | Plans for one time data collection in 1996 |
| National Household Survey on Drug Abuse (NHSDA) | |
|---|---|
| Contact | Joseph Gustin, Project Officer, NHSDA, SAMHSA/OAS, (301) 443-0021 |
| Sponsor | Substance Abuse and Mental Health Services Administration |
| Frequency | 1971-72, 1974, 1975, 1976, 1977, 1979, 1982, 1985, 1988, 1990-95. |
| Purpose | To measure the incidence and prevalence of use of illicit drugs, licit drugs used illegally, alcohol, and tobacco. To analyze patterns and demographic correlates of substance use. |
| Design | Screening/interviewing conducted person-to-person at respondents home using paper and pencil instruments. Consistent collection of all "core" prevalence variables over time plus modules that permit addition/deletion of new topics. Sensitive data are accessed through self-administered answer sheets. Continuous data collection with calendar year survey periods. Three major race/ethnicity domains are sampled (non-Hispanic non-Blacks, non-Hispanic Blacks, and Hispanics). |
| Content | Drug-related variables, e.g., age at first use, recency of use, frequency of use for 12 different drug categories, problems associated with substance use, etc., plus demographics, income, program participation, pregnancy, employment, health status, access to health care, mental health, criminal behavior and arrest and related factors. |
| Disability Measures | Questions on respondent problems associated with drug use are used to measure drug dependence. |
| Coverage | U.S. civilian noninstitutionalized population age 12+. |
| Sample | Stratified multistage area probability sample. Sample size: 18,000. Oversampling of youth, non-Hispanic African Americans, and Hispanics |
| Products |
Reports include (a) Population Estimates (b) NHSDA Main Findings and (c) Advance Report - NHSDA Preliminary Estimates. Special analytic reports are periodically produced on topics of current interest. Public Use Data Files are issued upon request (available in SAS format for years: 1979, 1982, 1985, 1988, and 1990-1993 (ASCII format for 1990 and 1991). Also, selected reports are available in electronic form via the Internet. |
| Future | Survey planned for 1996 (proposed for 1997). Proposed conversion of the survey instruments into electronic format (CAPI/audio CASI) in 1997-98. |
| Comments | Rapid reporting of survey results (six months after data collection). |
| Medicare Current Beneficiary Survey (MCBS) | |
|---|---|
| Contact | Gerry Adler (410) 966-7938 |
| Sponsor | Health Care Financing Administration |
| Frequency | Continuous panel since 1991, interviews approximately every four months. |
| Purpose | Originated from the need to provide valid estimates of health care spending by different age groups, to describe the effects of the Medic-are program on its beneficiaries, and to model the effects of proposed program changes. |
| Design | Sample from HCFA's Medicare enrollment file. |
| Content | Utilization, sources of payments for services, health insurance coverage, health status and functioning, access and satisfaction. |
| Disability Measures | Disability related to duty in armed services; level of functioning in ADLs and IADLs; use of devices and personal assistance is also included. Only sample survey of Medicare disabled program beneficiaries. |
| Coverage | All Medicare beneficiaries; community and institutional residents. |
| Sample | 12,674 (round one); 11,736 (two); 11,064 (three); 12,600 (four); approximately 16,000 (eleven); survey is supplemented annually and subject to rotation after round thirteen. |
| Products | Public Use file for Round 1 and Round 4 is available (linked with Medicare claims); 1992 fully linked public use file will be available in 1995. |
| Future | Plans to follow some individuals for up to four years. |
| Comments | |
| National Comorbidity Survey | |
|---|---|
| Contact | Ronald Kessler, University of Michigan (202) 401-7733 |
| Sponsor | U.S. Alcohol, Drug Abuse, and Mental Health Administration |
| Frequency | One-time survey, data collection 1990-1992. |
| Purpose | A congressionally mandated survey designed to study the co-morbidity of substance use and non-substance psychiatric disorders; the survey examines not only prevalence and incidence, but also risk factors. |
| Design | Stratified, multistage area probability sample; supplemental survey of nonrespondents. |
| Content | Affective, anxiety, substance use, and other psychiatric disorders; risk factor questions such as parental psychopathology, childhood family adversity, social networks and support, stressful life events and activities; utilization of services; unmet need. |
| Disability Measures | Disability days and work cutback days to mental disorders, substance use disorders, and other reasons; truncated set of ADL-type questions. |
| Coverage | Persons aged 15-54 in civilian, noninstitutionalized population in the 48 contiguous States; supplemental sample of students living on campus or in group housing. |
| Sample | 8,098 respondents |
| Products | Public use data tapes will be available in the next couple of years. |
| Future | Possible reinterview and a new cross-section of data for the year 2000. |
| Comments | |
| National Health and Nutrition Examination Survey (NHANES) | |
|---|---|
| Contact | Vicki Burt (301) 436-7080 ext.116 |
| Sponsor | National Center for Health Statistics |
| Frequency | 1971-1975 (NHANES I), 1976-1980 (NHANES II), 1988-1994 (NHANES III); a special study of the Hispanic population was conducted in 1982-1984. |
| Purpose | To assess the health status of the US population; to estimate the national prevalence and investigate trends in selected disease and risk factors; and to monitor trends in prevalence, awareness, treatment, and control of diseases. |
| Design | Respondents are interviewed at home, then examined, tested and interviewed again in a mobile examination center. NHANES III offered a home examination option for those unable or unwilling to come to mobile examination center. |
| Content | Data on health insurance; income and income assistance; family housing characteristics; physical and cognitive functional impairments; selected disabilities/conditions; and health and nutrition status. |
| Disability Measures | Measures in NHANES III include functional limitations (cognitive, physical and social), as well as the presence of selected health conditions. Questions asked of persons 17+ (60+ from 1988-91) regarding physical functioning, i.e., difficulty in performing certain physical activities, and need for assistance with ADLs and IADLs. Includes questions on use of assistive devices. Respondent are asked about receipt of Social Security benefits due to disability. |
| Coverage | Civilian, non-institutionalized population aged two months and older. (NHANES I covered persons aged 1-74 years; NHANES II covered persons 6 months to 74 years). |
| Sample | NHANES III has a total sample of 40,000 persons two months of age and over. Oversample of children age two months to five years, persons age 60+, Black Americans, and Mexican Americans. |
| Products | Public use tapes, publications. |
| Future | NCHS will attempt to secure adequate funding for a full scale NHANES in 1988, or will conduct a scaled back NHANES in 1998 with limited subgroup coverage and examination. |
| Comments | |
| National Health and Nutrition Examination Survey I Epidemiological Followup Study (NHEFS) | |
|---|---|
| Contact | Christine Cox, NCHS (301) 436-5979 x115 |
| Sponsor | National Center for Health Statistics, National Institute on Aging |
| Frequency | 1982-84, 1986, 1987, 1992. |
| Purpose | To measure changes in individual participants' characteristics between NHANES I and NHEFS; to track morbidity, mortality and institutionalization associated with suspected risk factors; and to provide a natural history of chronic disease and functional impairment. |
| Design | Personal interviews or telephone interviews are conducted with subjects or their proxies. Also collected are nursing home and hospital records of overnight stays, and death certificates of decedents. |
| Content | All waves were. asked about specific diseases and medical conditions. Collects morbidity, disability, and mortality data; demographic information; medical history and health care facility stays; functional status; health habits and risk factors such as blood pressure, smoking, cholesterol levels, alcohol consumption, nutritional deficiencies, estrogen use, impaired pulmonary function, and weight. |
| Disability Measures | Extensive functioning measures. Questions on difficulty with ADLs, assistance with ADLs, and use of special equipment. Also questions on chronic diseases. |
| Coverage | The civilian noninstitutionalized population who completed a medical examination of NHANES I in 1971-1975. |
| Sample | 14,407 persons between the ages of 25 and 74 in 1971-1975 |
| Products | Public use data tapes and documentation are available from the National Technical Information Service. Descriptions of the study methodologies are available in the NCHS Vital and Health Statistics Series I reports. Data from the 1992 study will be released in 1996. |
| Future | No current plan to reinterview subjects after the 1992 follow-up; however, there are plans to continue to follow passively through death certificates. |
| Comments | |
| National Health Interview Survey (NHIS) | |
|---|---|
| Contact | Gerry Hendershot (301) 436-7093 |
| Sponsor | National Center for Health Statistics |
| Frequency | Annually since 1957; survey is in the field continuously. |
| Purpose | To provide nationally representative data on the health status, health related behavior, and use of health services by the U.S. population. |
| Design | Core questionnaire on health and disability status. Periodic supplements on selected topics; e.g., 1994 and 1995 Disability Survey. Face-to-Face home interviews with trained Census personnel. |
| Content | Demographics, health and disability status, acute and chronic conditions, use of doctors and hospitals, income, health insurance, and program participation. |
| Disability Measures | The core questionnaire measures limitations at four levels: unable to perform major activity, limited in major activity, limited in nonmajor activity, and not limited in activity. Looks at prevalence of chronic conditions or impairments and restricted activity days. |
| Coverage | Civilian non-institutionalized population. |
| Sample | 50,000 households (125,000 persons) annually; in 1995 will include approximately 40,000 households and 100,000 persons. |
| Products | Publications (e.g., Advance Data Reports), public use data tapes, CD-Rom. |
| Future | Major redesign of questionnaire for 1996 is underway. |
| Comments | |
| While there are some gaps with disability measures in the core interview, many of these issues are addressed in the various supplements, such as those described below. For the special questionnaires, one adult is subsampled from the family; self-response is required. (In some supplements, questions are asked of everyone in household, and proxy responses are allowed.) | |
| 1988 Child Health Supplement | |
| Disability Measures | Various medical conditions, including missing limbs or permanent impairment, stiffness, or deformity of any limbs; asks questions about development, learning disabilities, and emotional or behavior problems lasting three months or more. |
| Comments | questions regarding development, learning, and behavior may give an indication of the number of individuals with such problems, but there is insufficient information regarding severity |
| 1989 Mental Health Supplement | |
| Disability Measures | Diagnosis of major mental illness, ADLs, IADLs, social functioning, disability payment due to mental illness. |
| Comments | |
| 1990 Supplement on Assistive Devices | |
| Disability Measures | Sets of questions about specific devices for mobility, hearing, vision, and speech; special features in the home designed for disabled persons. |
| Comments | |
| 1991 Supplements | |
| Disability Measures | Hearing; difficulty in or help with ADL and IADL related measures; chronic and disabling conditions; mental health. |
| Comments | mental health questions do no relate to a specific diagnosis of illness; do not know what the reason is for certain emotions |
| 1994 Access to Care Survey | |
| Disability Measures | Focuses on unmet needs, particularly on the acute care side; asks what kinds of services were needed. |
| Comments | |
| National Long-Term Care Survey (NLTCS) | |
|---|---|
| Contact | Larry Corder, Duke University (919) 684-6758 Ken Manton, Duke University (919) 684-6758 |
| Sponsor | National Institute on Aging; ASPE |
| Frequency | Intermittent 1982, 1984, 1989, 1994, 1999. |
| Purpose | To provide nationally representative data on the disability status and use of long-term care by the disabled elderly (age 65+). |
| Design | Separate questionnaires for disabled elderly in the community and those in institutions. Occasional supplements on informal caregiving (1982, 1989), healthy aging (1994), and decedents (1984, 1994). Household interviews were screened via telephone. |
| Content | Demographics, health and disability status, measures of physical and cognitive functioning; housing and neighborhood characteristics; use of medical providers and prescription medicines; use of formal and informal long-term care; health insurance; income and asset information. |
| Disability Measures | Institutional questionnaire looks at cognitive functioning and limitations in ADLs. Community questionnaire asks about limitations in ADLs and IADLs, cognitive functioning, who provides help, and use of devices and personal assistance. |
| Coverage | Medicare beneficiaries age 65+. |
| Sample | 5,000-6,000 community interviews; 1,300 institutional interviews. |
| Products | Publications; public use data tapes. |
| Future | Decision to be made about 1999 survey. |
| Comments | |
| National Medical Expenditure Survey-Household Survey, Survey of American Indians and Alaska Natives, Institutional Population Component (NMES) | |
|---|---|
| Contact | Barbara Altman (301) 594-1400 |
| Sponsor | Agency for Health Care Policy and Research (AHCPR) |
| Frequency | Decennial (approximately): 1987, 1977. |
| Purpose | To obtain information on health care utilization, expenditures, and sources of payment. |
| Design | Separate surveys for nationally representative samples of the civilian north institutionalized population, American Indian and Alaskan Native population, and for residents of nursing homes and facilities for persons with mental retardation. Four or five rounds each survey year. |
| Content | Demographics; health status; health care access and utilization for the complete year, expenditures and sources of payment; insurance status; employment information; income and assets; facility information and institutional expenditures in institutional survey. |
| Disability Measures | Detailed ADL and IADL measures; duration and intensity of impairment; use of devices; indicators of work and activity limitations; modified indicator of physical functioning; yearly total of disability days; indicators of receipt of disability benefit; ICD-9 coding indicating individual conditions; separate question asks specifically about mental retardation, cerebral palsy, spina bifida, and autism. |
| Coverage | Civilian non-institutionalized population; institutionalized population in nursing and board and care homes and facilities for persons with mental retardation. |
| Sample | Approximately 14,000 households in civilian population and 2,000 households in the American Indian and Alaskan Native population; 810 nursing and personal care homes; 691 facilities for persons with mental retardation; 5,726 residents of nursing and personal care homes; 4,421 residents of MR facilities. |
| Products | Publications; public use data tapes. |
| Future | New survey planned for 1996 currently in pretest stage; will not include the mental retardation facilities or special data collection on American Indians or Alaska Natives. |
| Comments | |
| National Mortality Followback Survey (NMFS) | |
|---|---|
| Contact | Jim Spitler (301) 436-7464 James A. Weed (301) 436-8952 |
| Sponsor | National Center for Health Statistics and various co-sponsoring Federal agencies. |
| Frequency | Intermittent: 1961, 1962-63, 1964-65, 1968, 1986, 1993. |
| Purpose | To supplement information on the death certificate with information on important characteristics of the decedent that may have affected mortality. |
| Design | Data collection instruments include: death certificates, next-of-kin informant questionnaires (primarily telephone interview), mail questionnaires to health care facilities used by decedent in last year of life, and medical examiner/coroner reports. |
| Content | Demographic characteristics, socioeconomic status, health status, lifestyle patterns, measures of physical and cognitive functioning, use of formal and informal long-term care, health insurance, income and asset information, cause of death, and lifetime nursing home use. |
| Disability Measures | Questions asked of next-of-kin concern memory impairment, decedent's need for assistance or special equipment to perform specific ADLs during last year of life, and presence of specific chronic conditions. The facility abstract record (FARS) collects data on diagnosis according to International Classification of Diseases (ICD) version 9, and the Clinical Modification (ICD-9-CM). |
| Coverage | For 1986 survey adults aged 25 and over who died in 1986. For 1993 survey, persons aged 15 and over who died in 1993. |
| Sample | Information is gathered on approximately 20,000 deaths selected from the Current Mortality Sample; a 10 percent sample of death certificates were received from the States. |
| Products | Publications, public use tapes. CD-Rom for surveys after 1986. |
| Future | Uncertain |
| Comments | |
| National Organization on Disability/Harris Survey of Americans with Disabilities | |
|---|---|
| Contact | Martin Walsh (202) 293-5960 |
| Sponsor | National Organization on Disability |
| Frequency | 1994 |
| Purpose | To study the attitudes and experiences of Americans with disabilities in regard to quality of life, employment and social opportunities, political and religious participation, financial status, lifestyles, job discrimination, personal assistance and equipment needs, and access to health care. |
| Design | Telephone interview of approximately 25 minutes with persons with disabilities. Proxies used when person with the disability was unavailable or unable to be interviewed. Also a comparison group of a sample of 1,115 adults without disabilities were asked a number of the survey questions. Many questions from survey were also asked in a 1988 survey. |
| Content | Type/severity/impact of disability or health condition; life satisfaction, social impact; employment status; health insurance; health care access; trends and the ADA; religion; ability/willingness to work; technology and computers; person and household characteristics. |
| Disability Measures | Screens respondents as a person with a disability if a disability or health problem prevents the individual from participating fully in work, school or other activities; if respondent states that he/she has a learning disability, emotional/mental disability, physical disability, or a talking, hearing, or visual impairment. Also includes respondents who consider themselves as a person with a disability. Once screened in, the survey asks for medical diagnosis of disability or health condition. |
| Coverage | Non-institutionalized persons with disabilities aged 16 and over. |
| Sample | 1,021 sampled nationally. |
| Products | Summary of findings available through publication, tape and computer disk. Public use data tapes are available. |
| Future | National Organization on Disability will continue to survey attitudes about people with disabilities. |
| Comments | |