A Resource Guide to Disability Statistics
The primary focus of the American Foundation for the Blind's Public Policy Center is programs affecting education and rehabilitation of persons with vision loss, as well as laws that relate to economic status and civil rights. However, policy advocates often require information about disability policy concerns in general. This page is intended to provide advocates with tools and information in the larger disability policy arena. These resources are listed in alphabetical order within each of the following categories.
General
Listservs
Journals (including special issues of journals)
Professional Associations
Centers and Studies Specific to Assistive Technology
Acronyms
General
Access to Disability Data: An InfoUse Project
InfoUse has prepared this site for use in research on disability in the United States as a product of
the Center on Access to Disability Data (NIDRR-funded). This site is based on information published in
NIDRR Chartbooks released from 1996-1999.
InfoUse
2560 Ninth Street, Suite 216
Berkeley, CA 94710-2566
E-mail: info_use@infouse.com
www.infouse.com/disabilitydata
DisabilityStatistics.org—An online resource for U.S. disability statistics
Beginning October 2003, funded by NIDRR, the DisabilityStatistics.org website condenses several data
sources into a single, user-friendly, accessible, Internet resource. It also provides essential
background on key issues related to disability statistics.
Cornell University, School of Industrial and Labor Relations
331 Ives
Ithaca, New York 14853
www.DisabilityStatistics.org
E-mail:
DisabilityStatistics@cornell.edu
(Former) Disability Statistics Center at University of California—San Francisco
Through September 2003, the NIDRR-funded Center produced and disseminated policy-relevant
statistical information on the demographics and status of people with disabilities in American society.
Research materials and reports are still available on the website.
UCSF Disability Statistics Center
Institute for Health & Aging
3333 California Street, Suite 340
San Francisco, CA 94118
http://dsc.ucsf.edu
Inter-agency Subcommittee on Disability Statistics (ISDS)
The ISDS is a subcommittee of the ICDR—see InfoUse: Assistive Technology
Data Collection Project for details. With members from 20+ Federal agencies and non-governmental
researchers, including WHO, ISDS meets monthly by teleconference, and at sites in D.C., Hyattsville,
Baltimore, and other locations, for discussion of statistical issues and terminology related to
disability. Minutes of ISDS meetings are disseminated to approximately 600 researchers.
Interagency Committee on Disability Research
National Institute on Disability and Rehabilitation Research
U.S. Department of Education
400 Maryland Ave., S.W.
Washington, D.C. 20202-2700
www.icdr.us/statistics.html
National Dissemination Center for Children with Disabilities (NICHCY)
The dissemination center is funded by the U.S. Department of Education, OSEP, and serves as a central
source of information on IDEA, No Child Left Behind (as it relates to children with disabilities), and
research-based information on effective educational practices.
NICHCY
P.O. Box 1492
Washington, DC 20013
www.nichcy.org
E-mail: nichcy@aed.org
National Survey of Older Americans Act (OAA) Participants 2003-2005
The Administration on Aging (AoA) has established the database from a collection of annual national surveys of recipients of Older Americans Act (OAA) program services reporting on service quality and consumer-reported outcomes. Survey information is included that addresses demographics for the aging population. Vision loss is a characteristic included in the demographics. Respondents were specifically asked if their doctor said they have an eye condition.
The Third National Survey of OAA Participants - 2005 full report of results is now available as a PDF document and a Word document.
The on-line query system for the National Survey of OAA Participants allows users to produce customized tables in a step-by-step process and output the results in print or spreadsheet form.
The National Survey of OAA Participants is one of four AoA databases available at the AGing Integrated Database (AGID) website.
North American Collaborating Center (NACC) on the International Classification of Functioning,
Disability and Health (ICF).
The NACC is located at the NCHS and works in close collaboration with the Canadian Institute for
Health Information (CIHI) and Statistics Canada. NACC maintains liaison with WHO on implementation and
maintenance of the set of International Classifications.
WHO Collaborating Center for North America
NCHS, Centers for Disease Control
3311 Toledo Road, Room 2413
Hyattsville, Maryland, 20782
www.cdc.gov/nchs/about/otheract/icd9/nacc.htm
E-mail: cdcinfo@cdc.gov
Toll free data inquiries: 800-232-4636
World Health Organization: Blindness and visual impairment
Worldwide, more than 161 million people are visually impaired; among them, 124 million have low vision and 37 million are blind. Another 153 million people live with visual impairment due to uncorrected refractive errors (near-sightedness, far-sightedness or astigmatism). Virtually all these people could restore normal vision with eyeglasses or contact lenses. More than 90% of the world's visually impaired people live in low- and middle-income countries. Except in the most developed countries, cataract remains the leading cause of blindness. The good news is that up to 75% of all blindness in adults is avoidable through prevention or treatment. Worldwide, corneal scarring is the single most important cause of avoidable blindness, followed by cataract and retinopathy of prematurity (ROP). An estimated 1.4 million children under age 15 are blind. Yet approximately half of all childhood blindness can be avoided by early treatment of disease and corre cting abnormalities at birth such as cataract and glaucoma.
www.who.int/features/factfiles/vision/01_en.html
Listservs
Centre for Disability Studies, University of Leeds
Leeds, UK
www.leeds.ac.uk/disability-studies/
E-mail: disability-studies@leeds.ac.uk
Subscription information and archives
www.jiscmail.ac.uk/lists/disability-research.html
Disability Policy Listserv
This list provides members key source documents and articles on emerging issues in the disability
community. It is sponsored by the Dimenet, a national computer networking system that is accessible at
multiple locations and provides access for communications and information sharing among individuals
involved in the disability rights and independent living movements, and the Tri-County Patriots for
Independent Living (TRIPIL), a Southwestern PA group which promotes independent living for and by
individuals with disabilities.
Disability-Research Listserv
This international discussion list (started in December 1994), is the largest of its kind. It
provides a forum for discussion on all aspects of research within Disability Studies—theoretical,
political and practical—with a focus on philosophy, sociology, political economy, etc, within a
social model approach.
Tri-County Patriots for Independent Living
69 East Beau Street
Washington, PA 15301
To subscribe: Send an e-mail to majordomo@tripil.com containing "subscribe dpolicy" in the body of the message.
Post to the listserv: dpolicy@tripil.com
Archives available at www.dimenet.com/dpolicy/archive.php
Journals (Including Special Issues of Journals)
Disability Studies Quarterly (DSQ)
DSQ is the journal of the Society for Disability Studies (SDS). It is an online, multidisciplinary, and
international journal of interest to social scientists, scholars in the humanities, disability rights
advocates, creative writers, and others concerned with the issues of people with disabilities.
Disability Studies Network Listserv
The Disability Studies Network (DSN) is a group of academics and other professionals from theater,
law, medicine, etc, who work throughout the NY-NJ-CT tri-state area. The DSN provides an opportunity
for networking and collaboration on interdisciplinary study of disability within a socio-political
context, and promotion of Disability Studies in academia and the larger society.
Teachers College, Columbia University
ATTN: Professor D. Kim Reid or Professor Lynne Bejoian
520 West 120th St.
New York, 10027
To subscribe: Send request to Dermot Foley, dermotfoley70@yahoo.com.
Post to the listserv: dsn@listserv.tc.columbia.edu
Journal of Disability Policy Studies
The only journal devoted exclusively to disability policy topics and issues. Published by PRO-ED, Inc.
www.proedinc.com/customer/content.aspx?redid=21
Disability and Society
Disability & Society is an international journal providing a focus for debate about such issues
as human rights, discrimination, definitions, policy and practices. Published by the Taylor and
Francis Group.
www.tandf.co.uk/journals/titles/09687599.asp
Special Issue of Health Care Financing Review
Spring 2003 issue (Volume 24, No. 3) "Conference Proceedings on Measuring Functional Status"
The Health Care Financing Review is the subscription journal of the Centers for Medicare & Medicaid
Services (CMS). In this special issue, articles focus on collection and classification of functional
status for payment and quality purposes. This is a zip file which, when downloaded must be unzipped.
www.cms.hhs.gov/HealthCareFinancingReview/Downloads/
Spring_2003_Conference_Proceedings_Measuring.zip
Professional Associations
American Association for Public Opinion Research
See "Guidelines and Tools for Documenting Survey Results" section of the web site; includes "Standard
Definitions: Final Dispositions of Case Codes and Outcome Rates for Surveys. 3rd edition." This
document outlines how to understand reported response rates in survey research. AAPOR is an
association of about 1,600 individuals who share an interest in public opinion and survey research.
Note: This association is not disability-specific, but provides standards for reporting survey data in general, which may be of importance in evaluating reports of disability statistics.
American Sociological Association (ASA), Committee on the Status of Persons with Disabilities in
Sociology
The Committee meets each year at the annual convention and addresses removal of disability-related
barriers to participation by sociologists in meetings and other professional venues and
opportunities.
www.asanet.org/cs/root/leftnav/committees/status_of_persons_with_disabilities_in_sociology
American Statistical Association (ASA), Committee on Statistics and Disability
The Committee aims to advance the use of statistics in disability research, including the demography
of disabled people; and to support disabled members and potential members of the ASA by working to
eliminate barriers within the organization and within the scientific, business, and government
communities.
Code of Standards and Ethics for Survey Research
CASRO is the trade association of survey research businesses, representing over 200 companies and
research operations in the United States, Canada, and Mexico. This report details mandatory standards
for all CASRO members in the practice of conducting survey research. It has been organized into
sections describing the responsibilities of a Survey Research Organization to Respondents, Clients and
Outside Contractors and in reporting study results.
www.casro.org/codeofstandards.cfm
Society for Disability Studies (SDS)
The Society for Disability Studies works to explore issues of disability and chronic illness from
scholarly perspectives. Members include social scientists, health researchers, and humanities scholars
as well as those active in the disability rights movement.
Centers and Studies Specific to Assistive Technology
Assistive Technology Devices and Home Accessibility Features: Prevalence, Payment, Need, and
Trends. (Advance Data, No. 217, Sept. 16, 1992)
Presents findings from the 1990 National Health Interview Survey Supplement on
Assistive Devices (NHIS-AD).
www.cdc.gov/nchs/data/ad/ad217.pdf
Assistive Technology Survey results: Continued Benefits and Needs Reported by Americans with Disabilities (September 27, 2001)
This study used data drawn from Phase 1 of NHIS-D to estimate the number of persons with disabilities
who use or need AT/IT devices and services; how they select and acquire AT/IT devices, and interact
with agencies that deliver AT/IT services at the State level. It suggests strategies to enhance the
AT/IT service delivery system.
www.ncddr.org/du/researchexchange/v07n01/atpaper
Center for Assistive Technology
The Center for Assistive Technology conducts research, education and service to increase
knowledge about assistive devices for persons with disabilities.
Community Research for Assistive Technology
A project of the California Foundation for Independent Living Centers and NIDRR
with the California State University, Northridge - Center on Disabilities. Its goal is to increase the
capacity of the independent living community to work with its members and stakeholders to collect
research data on access and use of AT.
Federal Policy Barriers to Assistive Technology (May 31, 2000)
Report required by the Assistive Technology Act of 1998 (P.L. 105-394), Title II, Section 202, describes the barriers in federal assistive technology policy to increasing the availability of and access to assistive technology devices and services for people with disabilities.
www.ncd.gov/newsroom/publications/2000/assisttechnology.htm
NIDRR Research Agenda, Chapter 5 - Technology for Access and Function Research
NIDRR's research agenda addresses a broad range of technology, including systems of public technology such as telecommunications and the built environment, and orphan technology for individuals. The NIDRR technology research program also encourages universal design practices.
www.ncddr.org/new/announcements/lrp/fy1999-2003/lrp_techaf.html
Study on the Financing of Assistive Technology Devices and Services for Individuals with Disabilities (March 4, 1993)
Study with recommendations, that was funded under Title II of the Technology-related Assistance for
Individuals with Disabilities Act of 1988 (P.L. 100-407), referred to as the Tech Act.
http://www.ncd.gov/newsroom/publications/1993/assistive.htm
Technology Assessment of the U.S. Assistive Technology Industry (February 2003)
The study was undertaken as a result of a February 1998 request from Katherine D. Seelman, Ph.D.,
then the director of NIDRR at the U.S. Department of Education and C. Dan Brand, then Chairman of the
FLC.
| Acronyms |
|
| Acronym |
Organization/Program |
|---|---|
| AAPOR | American Association for Public Opinion Research |
| APHA | American Public Health Association |
| ASA | American Sociological Association |
| ASA | American Statistical Association |
| AT | Assistive Technology |
| AT/IT | Assistive Technology/Information Technology |
| CASRO | Code of Standards and Ethics for Survey Research |
| CDC | Centers for Disease Control and Prevention |
| CMS | Centers for Medicare and Medicaid Services |
| 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-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 |
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