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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.

www.dsq-sds.org

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.

www.aapor.org

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.

www.amstat.org/comm/cmtesd/

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.

www.disstudies.org/

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.

http://cat.buffalo.edu

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.

www.atnet.org/

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.

www.icdr.us/atreportweb

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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