Disability data source user guides
The following user guides are designed to provide researchers and others with information on key disability data sources. They provide a detailed description of the dataset, including historical background, sampling, strengths, limitations and unique features. Each guide includes the definitions of disability used as well as illustrative tabulations generated from the data source.
American Community Survey (ACS) User Guide 2008-forward (2012)
User Guide: https://digitalcommons.ilr.cornell.edu/edicollect/1290/
This guide is an update and extension of the original American Community Survey (ACS) user guide written by Robert Weathers in 2005. It focuses on the new disability questions added to the ACS in 2008. The ACS is a nationally representative survey of households and “group quarters” (GQ) populations conducted by the U.S. Census Bureau. It is a valuable source of disability information, making it possible for researchers and policymakers to track changes in prevalence rates, employment and economic indicators across states and over time. It provides vital information on how the labor market and the social and policy environments may influence the status and economic well-being of the population with disabilities. The ACS offers researchers and others a tremendous amount of population-based information that can be used in a myriad of ways, from identifying potential populations and localities in need of services to providing baseline measures for comparison to other studies.
American Community Survey (ACS) User Guide (2004)
User Guide: https://digitalcommons.ilr.cornell.edu/edicollect/123
The purpose of this paper is to examine the information on the disability population in a nationally representative survey conducted by the U. S. Census Bureau called the American Community Survey (ACS). The paper is designed to provide a description of the disability data available in the ACS and how the data may be used to assess the employment and economic well-being of the population across states and over time. Descriptive statistics from the 2003 ACS Public Use Microdata Sample (PUMS) are used to illustrate the type of data analysis that will be useful to policymakers.
Behavioral Risk Factors Surveillance System (BRFSS) User Guide (2009)
User Guide: https://digitalcommons.ilr.cornell.edu/edicollect/1263/
This User Guide contains information on the Behavioral Risk Factors Surveillance System (BRFSS). The BRFSS is a state-based system of health surveys that collects information on health risk behaviors, preventive health practices, and health care access primarily related to chronic disease and injury. The survey is conducted by the state health departments with technical and methodological assistance provided by the U.S. Centers for Disease Control and Prevention (CDC). The BRFSS is an annual cross-sectional telephone-based survey that provides national, state, and limited county-level data. It is designed to allow the CDC, state health departments, and other health and education agencies to monitor risk behaviors related to chronic diseases, injuries and death, identify emerging health problems, establish and track health objectives, and develop and evaluate public health policies and programs. The core survey includes two questions that are used to identify the population with disabilities with other optional modules that target disability-related issues.
Current Population Survey (CPS) User Guide (2006) [work limitation disability]
User Guide: https://digitalcommons.ilr.cornell.edu/edicollect/1233/
This guide to the Current Population Survey-Annual Social and Economic Supplement (March CPS) reports the prevalence of working-age people reporting a work limitation disability and the employment and economic well being of this population. It compares these finding with other data sets using the ICF classification system. The comparative advantage of the CPS over alternative data sets is that it alone provides a consistent measure of the working-age population with disabilities from 1980 to the present. This guide discusses both the value and limitations of CPS data for policy makers, researchers and other individuals interested in capturing the size and socio-economic characteristics of the working-age population with disabilities over this time period.
Decennial Census (Census 2000) User Guide
User Guide: https://digitalcommons.ilr.cornell.edu/edicollect/187/
This User Guide addresses disability data available in the 2000 Decennial Census. A decennial census of the United States is conducted every ten years to provide statistics at the national, state, and local levels. The short form of the decennial census collects basic demographic data from five out of six households, and the long form collects the same basic demographic data, plus social and economic data from the remaining one in six households. Data are also collected from group quarters (GQ), which include individuals living in institutions, a population that is rarely included in surveys. The primary purpose of the demographic data is to draw Congressional districts. The social and economic data from the long form is especially valuable because it provides social and economic statistics for small geographic areas (such as counties, towns, and Congressional districts) that are estimated in a uniform manner across the United States.
The Census 2000 long form included six questions that are used to identify the population with disabilities. These data can be extremely useful to disability policymakers, disability service providers, and the disability advocacy community. This User Guide discusses the variety of information on disability, demographic characteristics, employment, and economic well-being available from Census 2000 long form data.
National Assessment of Educational Programs (NAEP) User Guide (2009)
User Guide: https://digitalcommons.ilr.cornell.edu/edicollect/1259/
Policymakers, service providers, disability advocacy groups and researchers use disability statistics for a wide variety of purposes. A common problem that these groups encounter is finding a data source, a disability definition and/or a statistical method that provides them with a disability statistic that is both relevant to their needs and useful. The mission of the Cornell StatsRRTC is to bridge the divide between the sources of disability data and the users of disability statistics. One product of this effort is a series of User Guides to national survey data sets that collect information on the disability population. The purpose of each of the User Guides is to provide disability data users with: 1. An easily accessible guide to the disability information available in the nationally representative survey; 2. Estimates of the population with a disability, the disability prevalence rate, and estimates of participation-related statistics; 3. A description of the unique features of the dataset that will help disability statistics users determine whether the dataset can provide them with the statistic that they need; and 4. A description of how the dataset compares to other national data that are used to describe the population with disabilities. This User Guide contains information on the National Assessment of Educational Programs (NAEP), also known as “the Nation's Report Card.” Unlike the other data sources addressed by the User Guide Series, the NAEP focuses solely on children. As a result, the focus of this Guide will shift to the inclusion and accommodation of educational activities of children with disabilities, as opposed to adult employment and economic well-being, which are the focus of many of the other User Guides
National Health Interview Survey (NHIS) User Guide (2005)
User Guide: https://digitalcommons.ilr.cornell.edu/edicollect/186/
The purpose of this paper is to examine the information on the population with disabilities in a nationally representative survey conducted by the National Center on Health Statistics called the National Health Interview Survey (NHIS). The paper provides a description of the disability information available in the NHIS and how the data may be used to assess the employment, economic well being and health of the population. Descriptive statistics from the 2002 NHIS public use files are used to illustrate the type of analysis that will be useful to researchers and policymakers.
National Health Interview Survey – Disability Supplement (NHIS-D) User Guide (2006)
User Guide: https://digitalcommons.ilr.cornell.edu/edicollect/1206/
The National Health Interview Survey - Disability supplement (NHIS-D) provides information that can be used to understand myriad topics related to health and disability. The survey provides comprehensive information on multiple disability conceptualizations that can be identified using information about health conditions (both physical and mental), activity limitations, and service receipt (e.g. SSI, SSDI, Vocational Rehabilitation). This provides flexibility for researchers in defining populations of interest. This paper provides a description of the data available in the NHIS-D and information on how the data can be used to better understand the lives of people with disabilities.
Panel Study of Income Dynamics (PSID) User Guide (2006)
User Guide: https://digitalcommons.ilr.cornell.edu/edicollect/1207/
This User Guide provides information on the Panel Study of Income Dynamics (PSID). The 2003 PSID is a nationally representative sample of over 7,000 families. The PSID began in 1968 with a sample of 4,800 families and re-interviewed these families on an annual basis from 1968-1997. Since then, it has re-interviewed them biennially. Following the same families and individuals since 1968, the PSID collects data on economic, health, and social behavior. (See https://psidonline.isr.umich.edu/ for detailed information on the PSID).
Initially, the PSID identified disability by asking the head of the household whether he, or she when no adult male is present, had a physical or nervous condition that limits his or her ability to work. In 1981 the PSID began asking the head this question with respect to his spouse. Additional questions that provide an opportunity to expand this definition of disability were included in 2003. The User Guide makes use of these new questions to estimate the size of the population with disabilities and the prevalence rate of disability in the population, as well as the employment rate and level of economic well-being.
The major strength of the PSID for those interested in disability research is its long-running information on families. No other nationally representative survey has captured such detailed information on the same families over such a long time. Such longitudinal data allows researchers to better understand the dynamics of the disability process and its consequences. Here we demonstrate the comparative advantage of the PSID over traditional cross-sectional data sets. Using the PSID, we identify persons with disabilities of various lengths and show the sensitivity of alternative definitions of the population with disabilities based on the duration of a disability. We also measure how the employment and economic well-being of individuals changes following the onset of a disability. Finally, we provide examples of how the PSID has been used with the German Socio-Economic Panel (GSOEP) to compare the employment and economic well-being of working-age people with disabilities in the United States and Germany. This analysis uses the equivalized data from these longitudinal datasets contained in the Cornell University Cross-National Equivalent File (CNEF).
Survey of Income and Program Participation (SIPP) User Guide (2006)
User Guide: https://digitalcommons.ilr.cornell.edu/edicollect/1195/
This paper discusses the utility of the SIPP in disability analyses, including a summary of descriptive statistics on people with disabilities from multiple SIPP panels, including the most recent SIPP panel (2001). The findings provide insights into the various health, employment, income, and program participation outcomes that may be associated with different definitions of disability and illustrates the potential for using SIPP data in further disability analyses. Our descriptive findings highlight the differences in the demographic composition and outcomes across disability definitions, underscoring the importance of carefully selecting an appropriate disability conceptualization in generating disability statistics.
A Guide to the Traumatic Brain Injury Model Systems National Database (2013)
User Guide: https://digitalcommons.ilr.cornell.edu/edicollect/1322
The primary purpose of this paper is to describe the Traumatic Brain Injury Model Systems National Dataset (TBIMS ND) and discuss its potential uses in rehabilitation research by examining the data structure, key variables, and data trends. This database is the only longitudinal long-term follow-up data set that documents pre-injury characteristics, acute care and rehabilitation services, and long-term rehabilitation outcomes for individuals with TBI in the United States. The descriptive analysis presented in this paper are aimed to inform researchers about potential uses of this data set in rehabilitation research.
Data sources used on this site
Find detailed information and links to user guides about the datasets used on DisabilityStatistics.org: