Updated April 2019

Understanding disability-specific demographic data provides powerful tools to policy advocates focused on disability rights. This page is intended to provide advocates with information and tips pertaining to accurate use of data sources that include individuals with vision loss. Resources are listed in alphabetical order within each of the following categories.

Current Data
Examples of Vision Loss-Specific Data Sources

AAPOR American Association for Public Opinion Research
ACS American Community Survey
APHA American Public Health Association
APH American Printing House
ASA American Sociological Association
ASA American Statistical Association
AT Assistive Technology
AT/IT Assistive Technology/Information Technology
BLS Bureau of Labor Statistics
CASRO Code of Standards and Ethics for Survey Research
CDC Centers for Disease Control and Prevention
CMS Centers for Medicare and Medicaid Services
CPS Current Population Survey
DHS Department of Health Services
DSQ Disability Studies Quarterly
FLC Federal Laboratory Consortium for Technology Transfer
ICD International Classification of Diseases
ICDR Interagency Committee on Disability Research
ICF International Classification of Functioning, Disability and Health
IDEA Individuals with Disabilities Education Act
ISDS Interagency Subcommittee on Disability Statistics
NACC North American Coordinating Center
NCD National Council on Disability
NCHS National Center for Health Statistics
NHIS National Health Interview Survey
NHIS-D National Health Interview Survey-Disability Supplement
NIDRR National Institute on Disability and Rehabilitation Research
NTIA National Telecommunications and Information Administration
OSEP Office of Special Education Programs
RRTC Rehabilitation Research and Training Center
SDS Society for Disability Studies
WHO World Health Organization

Current Data

The Long Wait for Vision Loss Data: It is generally not possible to find published national survey data that were actually collected in the current year. In fact, it may be two years or more before national survey data are available. That means that data collected in 2019 might not be available until 2021. Why the long wait for data pertaining to today’s population of people with vision loss? What follows are some explanations for what might at first seem to be a delay but is in fact part of the survey process for large-scale data sources such as the National Health Interview Survey (NHIS) or the American Community Survey (ACS).

Data Collection is a Separate Process from Data Release: First and foremost, the data are in the process of being collected during the current calendar year. It is not possible to collect and release data at the same time. The data would be incomplete if it was standard practice to collect and release data simultaneously. Thankfully, that is not the case.

Preparation for Data Release Takes Time and Precise Technique: Secondly, once the data for the current calendar year are collected, the data cannot be instantly released. The data are in the raw data form, meaning they have not yet been cleaned up and packaged for release. The national surveys that provide rich information about people with vision loss involve estimates pertaining to millions of Americans. The process between the conclusion of the data collection and the release of the data takes a lot of time and precise technique. Therefore, it is typical for the most current data that is available to lag behind the current calendar year by a couple of years.

Tip for Finding Current Data: Therefore, if an individual is seeking the most up to date numbers, he/she should be prepared to find estimates that might be from data sources that sampled the U.S. population one or two years prior the current calendar year. The calendar year and the data collection year do not match up with annually occurring large-scale federal surveys pertaining to people with vision loss. Also, the larger the scale of the data source, the more time it will take to prepare the data for release. These factors are all things to get used to early on in the data seeking adventure!

Examples of Vision Loss-Specific Data Sources

American Community Survey (ACS):

The American Community Survey is an ongoing annual statistical survey of civilian, non-institutionalized Americans, implemented by the U.S. Census Bureau. Information from the survey generates data that help determine how a large amount of federal and state funds are distributed each year. The disability-specific questions that are part of the ACS were introduced in 2008 and remain the same today. The disability-specific questions cover six disability types. Individuals who responded that they have serious difficulty seeing even when wearing glasses as well as those that are blind are considered to have self-reported vision loss by the ACS instrument.

Tip for Using the ACS Data Source: These ACS data are readily available on Cornell University’s Disability Statistics website. Cornell University has mined and produced reports detailing the American Community Survey data. This online resource for disability statistics that includes data pertaining to individuals of all ages with vision loss is located at www.disabilitystatistics.org. Investigators are encouraged to check it out.
Data seekers should also check out the American Fact Finder (AFF) website tools (provided by the Census Bureau). The AFF provides access to numerous tables as well as advanced features such as customizable maps. Want more? Even more advanced online analysis of ACS data (and other national data sets) can be performed using the Census Bureau's DataFerrett tool.

American Printing House for the Blind (APH) Annual Census:

The American Printing House for the Blind maintains an annual registry of people who are legally blind in educational settings below the college level. The children referred to range in age from 0-21 years and only include those children with vision loss who are legally blind in educational settings.

Tip for Using the APH Data Source: The American Printing House for the Blind Annual Report features the report of these annual census data. Reports for recent years are available at the following link: http://www.aph.org/about/#annual-reports. Many of the archived reports from years prior are available on the APH Museum website using the following link: www.aph.org/museum/collections/featured/annual-reports/. Details about the distribution of students from annual census data are available in the Federal Quota Reference section of the APH website.

It is important to note that "Statements regarding student literacy, use of appropriate learning media, and students taught in a specific medium cannot be supported using APH registration data."

Current Population Survey (CPS):

Starting in 2009, the U.S. Department of Labor's Bureau of Labor Statistics (BLS) officially reported the Current Population Survey (CPS) employment data about people with disabilities. These data have been gathered since six questions about disability were permanently added to the CPS, a monthly survey the federal government uses to estimate the unemployment level and rate in the United States. To be identified as having a vision loss by the CPS, participants must respond “yes” to the following survey item as it pertains to household members who are 15 years of age or older: “Is anyone blind or does anyone have serious difficulty seeing even when wearing glasses?”

Tip for Using the CPS Data Source: The monthly survey data on the employment status of people with a disability are available on the Bureau of Labor Statistics website using the following link: www.bls.gov/cps/cpsdisability.htm.

National Health Interview Survey (NHIS):

The National Health Interview Survey is an annual survey intended to provide nationally representative estimates on a wide range of health status and utilization measures among the non institutionalized population of the United States. The NHIS is one of the major data collection programs of the National Center for Health Statistics (NCHS) which is part of the Centers for Disease Control and Prevention (CDC). Individuals who reported that they have trouble seeing, even when wearing glasses or contact lenses, as well as to individuals who reported that they are blind or unable to see at all are identified as having vision loss by the NHIS. This estimate pertains to a nationally representative sample of the non institutionalized civilian population 18 years of age and over.

In 2019 the NHIS was redesigned, both in content and structure, to better meet the needs of data users. More information regarding this change can be found on the NHIS website.

Tip for Using the NHIS Data Source: To access the NHIS questionnaires, datasets, and related documentation on the Centers for Disease Control and Prevention website go to the following link: www.cdc.gov/nchs/nhis/index.htm.

U.S. Department of Education Individuals with Disabilities Improvement Act (IDEIA) Report to Congress:

The U.S. Department of Education is required by the IDEIA to report to Congress annually on the number of children receiving special education, by disability category, for ages 3-21 years. The count must be unduplicated - that is, children can only be counted in one category, regardless of the number of disabilities they experience. This information is provided within the Office of Special Education Program’s (OSEP’s) Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Improvement Act.

Tip for Using the U.S. Department of Education Data Source: The current report and reports from years prior are available on the U.S. Department Education website using the following link: www2.ed.gov/about/reports/annual/osep/index.html.

Disability Status Reports

Cornell University has mined and produced reports detailing the American Community Survey (ACS) data. These reports are frequently released 1-2 years after the year in which the data were collected (for example, in April of 2016, the most recent Reports available contained data from 2013). This online resource for disability statistics that includes data pertaining to individuals of all ages with vision loss is located at www.disabilitystatistics.org. Investigators are encouraged to check it out.

Annual Disability Statistics Compendium & Disability Statistics Annual Report

The University of New Hampshire partners with other researchers and agencies to mine and produce reports of disability statistics from multiple federal resources. The Annual Disability Statistics Compendium and companion Report are typically published in the winter, at least a full year after the end of the ACS data year (for example, the 2015 Disability Statistics Compendium was written based upon 2014 data and was released at an event in February of 2016). These are online resources for disability statistics that include data pertaining to individuals of all ages with vision loss, located at http://disabilitycompendium.org/.