RehabWire - Volume 9, Number 7, August 2007

Disability Statistics

The field of statistics was originally the analysis of data about the state (government). In the 400 years since its emergence as a field, it's grown considerably!

NIDRR Grantees on the Cutting Edge.

UCHSC Burn Model System Data Coordination Center (BMS/DCC), University of Colorado Health Sciences Center (H133A020402) led by Dennis C. Lezotte, PhD. Theresa San Agustin, MD, Project Officer.
Abstract: The BMS/DCC establishes a data management and analytical support facility for Burn Model Systems clinical and outcomes reserach projects. Objectives include: (1) to serve the clinical, reserach, and public communitites to which it is responsible; (2) to serve the needs of good scientific procedure in multi-institutional outcome research; and (3) to support the needs for patient safety and data confidentiality as required by Federal regulations when conducting collaborative clinical studies. The UCHSC BMS/DCC continues to accumulate and integrate a central repository of data from the Model Systems to enhance their abilities to make sentinel statements and change the way burn injury rehabilitation is conducted. While the main function of the DCC is to integrate and manage these data, it also needs to be responsive to the technical and analytical needs of these individual clinical centers. In addition the DCC provides and coordinates statistical support among the clinical and statistical groups from each Burn Center and is prepared to expand this support, adding several new protocols and/or clinical studies where appropriate.
Find out more at: http://bms-dcc.uchsc.edu/

National Spinal Cord Injury Statistical Center (NSCISC), University of Alabama/Birmingham (H133A060039) led by Yuying Chen, MD, PhD. Phillip Beatty, Project Officer.
Abstract: The National Spinal Cord Injury Statistical Center (NSCISC) at the University of Alabama at Birmingham has been the home of the National Spinal Cord Injury Model Systems (SCIMS) Data Center since 1983. The NSCISC continues and expands its current activities and implements innovative new tasks to accomplish the following goals: (1) maintenance of the SCIMS database, (2) high-quality data in the SCIMS database, (3) high quality data collected from database participants of all racial/ethnic backgrounds, (4) rigorous SCIMS database research conducted by all investigators, (5) enhanced continuity of the SCIMS database, and (6) improved database operations through collaboration.  To promote best research practices across the SCIMS, the Center establishes an annual online comprehensive training curriculum for SCIMS data collectors, conducts evaluative site visits, publishes a guide regarding proper use of the database, and refines standards on culturally appropriate SCI research.
Find out more at: www.spinalcord.uab.edu/NSCISC

Differing Definitions
The Census and the American Community Survey have slightly differente definitions of disability, employment, and employment disability. Visit Disabilitystatistics.org's glossary of terms to see just how close they are.

A Study of Developmental Disability Service Utilization and Expenditures in California, University of California, San Francisco (H133G050358) led by Charlene Harrington, PhD, RN. Edna Johnson, Project Officer.
Abstract: This project conducts a two-year secondary data analysis of over 200,000 individuals with developmental disabilities (DD) living at home and in the community who are actively served by the California regional center program. The study examines formal service utilization and expenditures for individuals with DD services. The study focuses on issues of equity in access to long term care services including personal care services for individuals with DD. Researchers describe the number and types of individuals with DD living at home or in the community in California in terms of their predisposing socio-demographic characteristics, enabling factors, and need factors. The project examines the amount and type of services and the costs of services (including residential care, group homes, day care, PAS, and other services). Multivariate analyses are used to test hypotheses that factors other than needs are major predictors of service use and costs of formal services for individuals with DD.

Public Spending for Disability in the United States:  A Comparative, Longitudinal Study, University of Colorado Health Sciences Center (H133G070163) led by David L. Braddock, PhD. David W. Keer, Project Officer.
Abstract: This project is a comprehensive longitudinal study of the characteristics, trends, and determinants of public spending for disability programs in the United States at the federal, state, and local level. Data collection and analysis utilizes 28 disability program subcategories across four major activity domains: income maintenance, general health care, long-term care, and special education. The project’s comprehensive focus includes intellectual/developmentaldisabilities, mental illness, and physical/sensory disability. The envisioned state-by-state and nationwide database on public spending and program participation will be developed across fiscal years 1997-2008.

Rehabilitation Research and Training Center on Demographics and Statistics, Cornell University (H133B031111) led by Andrew J. Houtenville, PhD. David W. Keer, Project Officer.
Abstract: The RRTC on Demographics and Statistics (Cornell StatsRRTC) bridges the divide between the sources of disability data and the users of disability statistics. The project conducts research exploring the reliability of existing data sources and collection methods, and studies the potential to improve current and future data collection efforts. In addition, the project utilizes existing data sources to provide a comprehensive and reliable set of statistics, and increase access to and understanding of how statistics can be used effectively to support decision making. Cornell StatsRRTC works with key organizations to determine their needs and helps them maximize the use of disability statistics in their ongoing efforts to improve the lives of people with disabilities and their families. As members of the Cornell StatsRRTC, the American Association of People with Disabilities, the Center for an Accessible Society, and InfoUse provide vital expertise and resources needed to reach the users of disability data and statistics. The Cornell StatsRRTC includes researchers from Cornell University, Mathematica Policy Research, the Urban Institute, and the Institute for Matching People and Technology, all of which bring extensive expertise in working with and creating sources of disability data.
Find out more at: www.disabilitystatistics.org

Demographic Soup: Disentangling the Conceptual, Political, and Methodological Dimensions of Disability Statistics, (H133F060011) led by Barbara Altman. A. Cate Miller, PhD, Project Officer.
Abstract: This project brings together, in one document, the accumulation of knowledge on measuring disability in survey and census contexts.  The book manuscript is divided into five sections: (1) examination of the political and historical context, which includes chapters on the history of disability measurement; (2) examination of the conceptualization and definition of disability, including chapters on the political definitions for programmatic purposes and theoretical definitions; (3) examination of the science, purpose, and relationship between the components of measurement, and the specific problems with measurement in relation to special populations (i.e. children); (4) reviews of sample analysis and the use of data including sources of data, research questions, and special focus on measures used in special areas of research (i.e. aging and employment); and (5) exploration of international measurement of disability and the role of the US in its development. Conclusions include recommendations for improving and standardizing the
measurement and data collection process.

Using the U.S. Equal Employment Opportunity Commission (EEOC) Employment Discrimination Charge Data System for Research and Dissemination Purposes, Cornell University (H133G040265) led by Susanne Bruyère, PhD. David W. Keer, Project Officer.
Abstract: Using data from the Equal Employment Opportunity Commission (EEOC) Charge Data System (CDS), this project analyzes trends in employment discrimination charges related to the ADA and other laws. The CDS collects data on employment discrimination charges covered under Title I of the ADA, as well as data on charges related to other laws. It contains information on (a) the demographic characteristics of charging parties, such as gender, racial and ethnic status, age, location, and type of disability (e.g., back impairment, depression); (b) type of discriminatory behavior, such as refusal to hire, failure to provide reasonable accommodation, unfair discharge, harassment; and (c) charge outcomes, such as withdrawal with benefits, settlements, and other such outcomes. The project uses these data to explore trends over time and across the states, and investigate whether these trends are related to changes in the composition of the population with disabilities and changes in labor market conditions.
Find out more at: www.ilr.cornell.edu/edi/p-eeoc.cfm

Looking for More?
National Center for Education Statistics nces.ed.gov
National Center for Health Statistics cdc.gov/nchs
The Census census.gov
Bureau of Labor Statistics bls.gov
World Health Organization who.int/research/en

Current Literature - Selections from REHABDATA

Wittenburg, D., Nelson, S. (2006) A guide to disability statistics from the Survey of Income and Program Participation. NARIC Accession Number: O16483. Project Number: H133B031111.
Abstract: This paper discusses the utility of the Survey of Income and Program Participation (SIPP) in disability analyses, including a summary of descriptive statistics on people with disabilities from multiple SIPP panels. 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. The descriptive findings highlight the differences in the demographic composition and outcomes across disability definitions, underscoring the importance of carefully selecting an appropriate conceptual model of disability in generating disability statistics. Full text available to download from naric.com.

Burkhauser, R., Weather II., R. (2006) A guide to disability statistics from the Panel Study of Income Dynamics. NARIC Accession Number: O16485. Project Number: H133B031111.
Abstract: 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. Following the same families and individuals since 1968, the PSID collects data on economic, health, and social behavior. The major strength of the PSID is its long-running information on families. Such longitudinal data allows researchers to better understand the dynamis of the disability process and its consequences. The PSID data can be used to 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. It also measures how the employment and economic well-being of individuals changes following the onset of a disability. Full text available to download from naric.com.

Maag, E. (2006) A guide to disability statistics from the National Health Interview Survey - Disability supplement. NARIC  Accession Number: O16486. Project Number: H133B031111.
Abstract: This guide provides a description of the data available in the National Health Interview Survey - Disability supplement (NHIS-D) and how that information can be used to better understand the lives of people with disabilities. The NHIS-D provides extensive information about the types of services people with disabilities receive, transportation issues facing working age adults with disabilities, social activities of people with disabilities, vocational rehabilitation services, and accommodations. The supplement also provides comprehensive information on multiple disability conceptualizations that can be identified using information about health conditions (both physical and mental), activity limitations, and program participation. A guide to the National Health Interview Survey is also available under NARIC Accession Number O16480. Full text available to download from naric.com.

Weathers II, R. (2005) A guide to disability statistics from the American Community Survey. NARIC Accession Number: O16106. Project Number: H133B031111.
Abstract: Guide contains information on a national survey of households conducted by the US Census Bureau called the American Community Survey (ACS). The ACS is conducted each year and currently provides national and state level data on demographic, social, economic, and housing characteristics. The survey includes six questions that are used to identify the populations with disabilities. Full text available to download from naric.com.

Erickson, W., Houtenville, A. (2005) A guide to disability statistics from the 2000 Decennial Census. NARIC Accession Number: O16481. Project Number: H133B031111.
Abstract: This User Guide discusses the variety of information on disability, demographic characteristics, employment, and economic well-being available in the 2000 Decennial Census. A census of the US is conducted every 10 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. The Census 2000 long form includes 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. Full text available to download from naric.com.

(2001) Understanding research: Part III: Those scary statistics. NARIC Accession Number: O14075. Project Number: H133G80011.
Abstract: Brochure on basic statistical concepts, including the mean, median, standard deviation, statistical significance, validity, and the difference between proving a causal link and establishing a relationship or association. Concepts are discussed with reference to statistics concerning spinal cord injury. Full text available to download from www.craighospital.org/SCI/METS/stats.asp

Burkhauser, R., Houtenville, A. (2001) A user guide to current statistics on the employment of people with disabilities. NARIC Accession Number: O14793. Project Number: H133B980038.
Abstract: Report discusses the debate over the reported decline in the employment rate of people with disabilities, which is based on data from national surveys. The root cause of the disagreement is the difficulty in measuring or defining disability. Authors argue that current data sets are sufficient to determine trends of prevalence and employment success of people with disabilities based on reasonable definitions of disability. A research brief of this report is available under accession number O14791.

World Health Statistics The World Health Organization presents 10 highlights of gloabl health statistics for 2006. Among the reports are statistics on chronic illnesses and mental health, HIV, future trends, and appropriate use of health statistics. Download a free copy at who.int/research/en.

Where Can I Find More? A quick keyword search is all you need to connect to a wealth of disability and rehabilitation research. NARIC's databases hold more than 75,000 resources. Visit www.naric.com/research to search for literature, current and past research projects, and organizations and agenciesin the US and abroad.