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APPENDIX 28. SURVEY OF THE PUBLIC INFORMATION NEEDS OF 

DISADVANTAGED AND SPECIAL POPULATIONS 

In early September 2000, NCLIS conducted an informal survey of 9 organizations that 

represent, or advocate on behalf of, special populations including disabled or 

disadvantaged individuals to determine their policies, programs and practices relating 

to public information dissemination. The survey instrument and the survey results are 

provided below. 

NCLIS SURVEY OF THE PUBLIC INFORMATION NEEDS OF 

DISADVANTAGED AND SPECIAL POPULATIONS125

Conducted by F. Woody Horton and Sarah T. Kadec, NCLIS Consultants 

SURVEY INSTRUMENT126

Several committees of the U.S. Congress have asked the U.S. National Commission on Libraries and 

Information Science (NCLIS) to recommend reforms to the Nation's laws, policies, programs, and 

practices governing the dissemination of government information to the public. The study comes about 

essentially because of the advent of the World Wide Web, and the rapidly accelerating federal agency 

actions to migrate their government information products for the public from ink-on-paper formats and 

mediums to the new electronic formats and mediums, especially the Internet. The Government 

Paperwork Elimination Act (GPEA), recently enacted by the Congress and signed into law, also 

mandates the transferal of transactions between the government and the people from traditional paperbased to electronic modes. 

The Commission is already deeply into this study, and is very pleased to be receiving the active 

participation and involvement of a great many information and policy experts, associations, library 

groups, public interest groups, and others; four panels and a Board of Experts have been at work since 

late June. A final report will be sent to the Congress and the President by December 15, 2000. 

Background on the study can be found at www.nclis.gov/govt/assess/assess.html. 

One of the most important "stakeholder groups" that heavily depends on government information are 

what are sometimes called "special need clientele" organizations, or, in other cases, organizations that 

represent memberships that are "disadvantaged" or handicapped in one respect or another. For 

example, memberships comprised of individuals or groups which are, in some manner, physically, 

emotionally, financially handicapped, or by virtue of their remote residency (e.g. rural areas), or by 

virtue of their minority status (e.g. gender, age, race, religion, ethnicity, etc.) unable to identify, much 

less search online and retrieve the information once found, the government information resources they 

need to cope with their special information needs or their particular disadvantages or handicaps. In 

both cases, the associations or societies which represent such individuals and/or groups have special 

information needs that are not otherwise being fully and adequately served by normally available 

 

125 Available at http://www.nclis.gov/govt/assess/assess.appen28.pdf. 126 The survey instrument is also available at http://www.nclis.gov/govt/assess/special.html. 
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public information services. Congress wants to know what changes are needed to strengthen its public 

information infrastructure to better serve them. 

We are contacting you to ask for your assistance in a survey which we are conducting of a crosssection sampling of just a few associations, societies, and similar groups whose memberships and/or 

constituencies fall within one of the above categories. Woody Horton and Sarah Kadec are cocoordinating this study. If neither of them, nor Judy Russell, the NCLIS Deputy Director, has already 

contacted you, they soon will. However, please feel free at any time to telephone Horton or Russell at 

202-606-9200. Kadec can be reached at (757) 259-0358. 

We are asking you to do two things. 

First, we would like to know about any published information or literature that deals with this 

challenge. Perhaps, for example, an article has been recently written that is published in either book or 

journal article form by one of your own members, for which you can provide us a citation. Or perhaps 

your organization has a web site which has such information available and accessible through the 

Internet, in which case we would also appreciate learning the URL address. 

Second, we would like you to respond to the following questions and, if you provide a "yes" answer to 

any of them, kindly furnish us with a hard copy of the material (or call our attention to the web site 

containing the information if it is in electronic form): 

1. Does your organization have any published policies and/or programs for providing government 

information (federal, state, local, or tribal) to your membership (e.g. how to access such 

information, where to go, whom to see, and so forth)? 

2. What information do you not now receive from government that your membership/clientele often 

need or want? 

3. What kind of government information resources does your association, society, or other kind of 

organization, most heavily depend on to meet the needs of its membership/clientele? 

4. What changes in the government's laws, policies, programs, or practices governing the 

dissemination of information to the public might you recommend, which NCLIS, in turn, might be 

able to recommend to the President and the Congress in its final report? 

In addition to the above, perhaps you would be interested in writing a special 'white paper' for the 

Commission's study. We could then provide the paper to our Panel 3, which is dealing with the 

information needs of the various individuals and groups outside of government, such as yours. Perhaps 

you have a "success story" to tell us, where your group has established a creative or innovative 

information service, system, or network to help its members search for, find, and then obtain and use 

government information. We would like to know about such a valuable resource so that we might, 

through our final report, share the idea with others. 

We would much appreciate receiving this information by October 1st, or even earlier if possible, 

because of our very tight study deadline. Electronic responses can be sent to whorton@nclis.gov. 

Faxed responses can be sent to (202) 606-9203. Mailed responses should be sent to the below address. 

The Commission wishes to thank you in advance for your willingness to assist us in this important 

endeavor. We believe the final results could be very valuable to you and your memberships/clienteles. 

US NCLIS 

1110 Vermont Avenue, N 
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Suite 820 

Washington, DC 20005-3552 

SURVEY RESPONSES FROM ASSOCIATIONS AND OTHER ORGANIZATIONS 

Introductory Note

As a part of its effort to examine government public information dissemination, NCLIS believed that it 

was absolutely necessary to be very concerned with those individuals and groups in the general 

population who may have physical, emotional, or other problems in searching for, retrieving, or using 

government information available to them electronically. Sometimes the problems were directly 

related to a disability condition. Sometimes the problems were related to geographic location, such as 

rural Americans. Sometimes the problems had to do with state-of-the-art of the technologies being 

employed that are as yet inadequate to fully and effectively deal with the problem. 

Nine different groups were contacted. They represented two types of organizations: 

• The organization, such as a professional association, either was a direct membership society which 

represented a certain disadvantaged group and its membership counted those individuals in its 

ranks as members. 

• The organization was not a direct membership kind of group, but, rather, worked toward the 

resolution of the problems of a certain disadvantaged group through lobbying and other public 

interest activities, or through other means such as leveraging financial resources, through 

philanthropic activities, and so forth. 

Responses were received from seven of the nine groups contacted. Several of the groups did not reply 

specifically to the four questions, but, instead, discussed various critical issues that they believed that 

their clienteles face in accessing government information in electronic form. Both the responses to the 

NCLIS questions, and their comments, are summarized below. 

Summary of Responses

1. Does your organization have any published policies and/or programs for providing government 

information (federal, state, local, or tribal) to your membership (e.g. how to access such 

information, where to go, whom to see, and so forth)? 

American Association on Mental Retardation (AAMR).

127 Currently collaborating on the development 

of RADAR (Focused Research and Reporting on Critical Development Disability Issues), with biweekly "Radar" reports in an online data warehouse. The system is similar to one at the Substance 

Abuse and Mental Health Services Administrations (SAMHSA). 

Association for the Advancement of Retired Persons (AARP).

128 Maintains the Ageline database of 

articles and book summaries. This database is licensed to several search services, and it will be added 

to the AARP web site later this year. AARP seeks to inform citizens of government benefits through 

its Public Benefits Outreach. 

 

127 Its website is at http://207.201.142.179/index.shtml. 128 Its website is at http://www.aarp.org/. 
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Columbia Lighthouse for the Blind (CLB).

129 This organization is concerned with visually impaired 

people and particularly their ability to find employment. It has entered a strategic partnership with the 

Colorado-based audio bookstore ReelBooks Internet Inc., to develop an e-commerce business operated 

by employees who are blind and visually impaired. ReelBooks.com provides online training and 

employment opportunities. Its employees receive hands-on training in Internet technology, technical 

support, and customer service. 

National Library Service (NLS) for the Blind and Physically Handicapped (within the Library of 

Congress).

130 Yes, the NLS Collection Building policy, including discussion of the NLS' responsibility 

for making library materials available for the blind and physically handicapped U.S. citizens living in 

the U.S. or abroad. 

National Organization on Disabilities (NOD).

131 Discussions are underway to develop a program to 

reach business and volunteer groups needing information on how to most effectively serve people with 

disabilities. 

Self Help for Hard of Hearing People Within the National Center on Assistive Technologies 

(SHHHP).

132 No input. 

TDI.

133 No input. 

2. What information do you not now receive from government that your membership/clientele often 

need or want? 

AAMR. Information on key issues relating to developmental disabilities (abuse, housing, aging, 

employment, and transportation). 

AARP. No input. 

CLB. Information on e-commerce and acquiring valuable career skills that increase future job 

marketability. 

NLS. Public popular consumer information documents that come from various federal agencies, and 

time-sensitive documents. 

NOD. Information on the "how-to" part of disability work. 

SHHHP. No input. 

TDI. Anything and everything must have sound, text, or captions to meet the needs of those who are 

deaf, hard of hearing, late-deafened or deaf-blind. This includes streaming videos and web sites that 

"talk," etc. 

 

129 Its website is at http://www.clb.org/. 130 Its website is at http://lcweb.loc.gov/nls/nls.html. 131 Its website is at http://www.nod.org/. 132 Its website is at http://www.shhh.org/. 133 TDI was formerly known as Telecommunications for the Deaf, Inc. Its website is at http://www.tdi-online.org/. 
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3. What kind of government information resources does your association, society, or other kind of 

organization most heavily depend on to meet the needs of its membership/clientele? 

AAMR. Vital policy, financial, research, and service information on issues and trends in mental health 

and substance abuse services. 

AARP. Social Security, Medicare, and Medicaid information is obtained through AARP web site links 

to government and other sites. 

CLB. No input. 

NLS. Public popular consumer information documents, and research and statistical information from 

various federal information referral centers. 

NOD. Basics on the ADA and other legislation. 

SHHHP. Section 508 of the Rehabilitation Act. – Electronic and Information Technology, and 

guidance on accessible web sites included in the WWW Consortium. 

TDI. No input. 

4. What changes in the government's laws, policies, programs, or practices governing the 

dissemination of government information to the public might you recommend, which NCLIS, in 

turn, might be able to recommend to the President and the Congress in its final report? 

AAMR. No input. 

AARP. Move from offering simple, passive access to government information to actively getting it 

into the hands of individual who need it. Resolution of the problem of degradability and technical 

vulnerability of information in electronic formats. An agency of government should implement 

solutions to the impermanence of digital information. Universal access is necessary before government 

can cease traditional publishing efforts, the situation will improve, but not necessarily for everyone in 

society. 

CLB. Support for providing employment opportunities for the blind and visually impaired residents of 

the Washington, D.C. area. 

NLS. Of the government information readily available to the public, how much of it is in accessible 

formats such as audiotape, Braille, and computer diskettes for special needs population. The federal 

government should have an office where any agency could get training on providing accessible 

formats, specialized software they need to adapt it to their needs, and the monthly charges imposed for 

access. 

NOD. Web-based way to search through government materials that have to do with the "how-to" part 

of disability work. 

SHHHP. No input. 

TDI. No input. 
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Additional Notes important to these groups include: 

The NLS provided the following comments based on a document entitled Computer and Internet Use 

Among People with Disabilities, published by the Disability Statistics Center, University of California, 

San Francisco.134 People with disabilities perhaps stand to gain the most from the new technologies, 

which are important tools with which to gain greater independence and social integration, yet they 

have among the lowest rates of use. Many are poor and cannot afford a computer capable of 

navigating the Internet. There is a need for lower-cost computing and access, simpler user interfaces, 

and a concerted program of education along with training and support in the use of hardware and 

software. 

SHHHP referred the Commission to the Target Center at the Department of Agriculture, where free 

workshops on accessibility and the Internet are provided. Specifically the Commission was reminded 

of a Section 508 workshop at the IDEAS Conference held at the Department. 

Detailed Responses

American Association on Mental Retardation (AAMR). 

We have just received a grant of national significance to establish "RADAR:" 

Radar Project Summary/Abstract 

AAMR, a credible, well-respected organization concerned about intellectual and other developmental 

disabilities, will collaborate with The Lewin Group, (TLG), an experienced, respected, international 

health care consulting firm with proven competence in database development and management, to 

develop RADAR: Focused Research and Reporting on Critical Developmental Disability Issues. The 

RADAR System will be modeled after a similar system that was developed by TLG for the Substance 

Abuse and Mental Health Services Administration (SAMHSA). The SAMHSA system has been 

operating for three years and provides the agency with vital policy, financial, research, and service 

information on issues and trends in mental health and substance abuse services. 

AAMR and TLG firmly believe our entire network would benefit greatly, if similar information were 

available to all stakeholders in the mental 

retardation/developmental disabilities network. Furthermore, implementation of the Roadmap to the 

Future demands the capacity to identify and track developmental disabilities issues, activities, and 

trends at the national, state, and local levels. 

The AAMR/Lewin Team will work with all developmental disability stakeholders to develop the 

content of the RADAR "early alert" Internet database system. Representatives from the developmental 

disabilities network, including individuals with disabilities and family members, will form a RADAR 

Advisory Council to guide development of keywords and provide overall project monitoring. 

RADAR activities in the first year will focus on designing, testing and building the online Data 

Warehouse. On a weekly basis RADAR personnel will monitor the general news media and specific 

trade press related to developmental disabilities to collect nationwide information on key issues. A few 

examples of potential issues to be tracked include abuse, housing, aging, employment, and 

transportation. The information, gathered from more than 150 sources, will be summarized into bi-

 

134 H. Stephen Kaye, Disability and the Digital Divide, Abstract 22, San Francisco: Disability Statistics Center, University of 

California, San Francisco, July 2000; http://www.dsc.ucsf.edu/UCSF/pdf/ABSTRACT22.pdf.
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weekly "RADAR" reports, which will be stored in the online Data Warehouse. All stakeholders, even 

the general public, will be able to access the Data Warehouse via the Internet. They will be able 

review the current report or search past entries. At the end of the first year of the RADAR initiative, 

the database content, ease of access and system utilization will be evaluated. In the second year, the 

technological accessibility for individuals with disabilities and their families will be reviewed. 

With Advisory Council input, necessary modifications will be made to the RADAR System. In the 

third year, database content should be substantive and RADAR personnel will be able to focus on data 

mapping and trend analyses while continuing data collection activities. 

Prepared by: 

Doreen Croser, AAMR 

Association for the Advancement of Retired Persons (AARP). 

I have asked some of my colleagues to respond to different parts of your memo, so you may be 

receiving some additional material by email related to your information request. 

My own responses in this memo should be taken as my own opinions, not necessarily reflective of 

official AARP policy. 

As a former government documents librarian (at the regional depository library at the University of 

Maryland, College Park) I strongly support your inquiry into ways of improving the dissemination of 

U.S. government information to the public. The depository library system, laudable for the intentions 

behind it and for the hard effort invested in it, really has not resulted in universal public use (as 

opposed to access) of federal information resources; nor has that system been effective at including all 

U.S. government publications within its scope. Many of those publications are in fact only available 

through commercial products that supplement depository library collections (such as the CIS 

Index\Abstracts microfiche collections). The searchability and home access that the Internet makes 

possible allows for the government to move from offering simple, passive access to government 

information to actively getting it into the hands of individuals who need it. 

That said, the problem of the degradability and technical vulnerability of information in electronic 

formats has still not been resolved. Some depository libraries have government documents in paper 

copy that were produced in the early 1800s. In contrast, the digital formats of the 1960s and 1970s--

including IBM punch cards--are unreadable by the common computing hardware in use today. The 

economic incentive for government agencies to move from print to electronic publishing formats is 

strong, as is the benefit of searchability and timeliness that comes with digital information. Archiving 

that information for future reference, however, is complicated by the fact that magnetic media decay 

and digital formats and hardware change unpredictably. Is there any agency of government prepared to 

find and implement solutions to the impermanence of digital information? 

An additional problem is that access to digital information is by no means universal yet throughout the 

U.S. and the world. The savings occur if government can cease traditional publishing efforts in favor 

of digital ones, but that will inevitably mean closing off access to government information to large 

areas of the citizenry. Aside from the issue of the cost of computer ownership and communication, 

there is the issue of training in the use of computers as information machines. Most of us learn to read 

in school, and many of us can do so with no more complicated "hardware" than our eyes. Moving 

entirely to digital information means making information access and use dependent upon a high level 

of education, facility in using computer hardware that continues to change from year to year, and the 
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money and savvy to either have the equipment at home or know how to get at it conveniently. 

Granted, this situation will improve--but not necessarily for everyone in our society. 

The organization for which I currently work, AARP, is deeply involved with advocacy and 

information programs around Social Security, Medicare and Medicaid issues, among others. Our own 

Web site links to government and other sites related to these issues. Interpreting the issues and details 

surrounding these programs is one of the things AARP seeks to do in its own publications and 

programs. 

Public Benefits Outreach, in which the organization seeks to inform senior citizens of government 

benefits for which they may be eligible but of which they may be unaware, is another of AARP's 

concerns. 

After today I will be out of the office until October 3rd, so, unfortunately, I will not be able to respond 

to any follow-up questions you may have about this response. 

Prepared by Hugh O'Connor 

Association for the Advancement of Retired Persons 

Columbia Lighthouse for the Blind (CLB) 

(From Digital Voices -- September 25, 2000) 

Region's New Economy Can't Exclude the Blind and Visually Impaired 

As the president and chief executive officer of an organization providing programs and services to 

20,000 visually impaired people in the Washington, D.C. area, I find it staggering that, even in the 

face of the current labor shortage, 70 percent of blind, working age adults in the United States remain 

unemployed. Initiatives designed to improve this unacceptably high unemployment rate and bridge the 

"digital divide" are urgently needed ["Initiatives for Disabled Unveiled," National News, September 

22]. 

Recent advances in adaptive and assistive technology, such as screen magnification software and 

software that converts text into speech, can help to bridge this divide. Assistive technology is 

revolutionizing professional opportunities for the blind and visually impaired community, specifically 

in the communications and information services industry. This technology enables individuals who are 

experiencing vision loss to acquire and retain the skills necessary to achieve economic independence 

and allows visually impaired persons attempting to re-enter the workforce to develop marketable 

career skills. People who are blind and visually impaired can turn to the Columbia Lighthouse for the 

Blind to receive training in this technology. 

In order to demonstrate to other local employers how easily, effectively and efficiently this technology 

can be integrated into the workplace, the Columbia Lighthouse for the Blind recently entered into a 

strategic partnership with the Colorado-based audio bookstore Reel Books Internet, Inc., to develop an 

e-commerce business that is operated by employees who are blind and visually impaired. 

The resulting website, ReelBooks.com, is an online audio bookstore designed to provide training and 

employment opportunities consistent with the region's "new economy." In addition to learning about ecommerce and acquiring valuable career skills that increase their future job marketability, the blind 
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and visually impaired employees working for ReelBooks.com receive hands-on training in internetdriven technology, technical support and customer service. 

The ultimate goal of this venture is to provide savvy, well-trained employees to other tech companies 

in the Washington, DC area, as well as to offer valuable retail service in the rapidly expanding market 

of audio books. 

The official launch of ReelBooks.com will be held on Capitol Hill Thursday, September 28 from 5:00 

- 7:00 p.m. in room B-369 of the Rayburn House Office Building. I invite Members of Congress, local 

business and community leaders and the residents of the Washington, DC area to attend the launch and 

show their support for providing employment opportunities for the blind and visually impaired 

residents of the metropolitan Washington, DC area. 

Prepared by: 

Dale Otto 

President & CEO 

Columbia Lighthouse for the Blind 

National Library Service for the Blind and Physically Handicapped (NLS) 

1. Does your organization have any published policies and/or programs for providing government 

information (federal, state, local, or tribal) to your membership (e.g. how to access such 

information, where to go, whom to see, and so forth)? 

Yes, we have enclosed a copy of the NLS Collection Building policy and other related documents. We 

also included Sources of Braille Reading Material and NBA Suggestions for Producing Large Print 

Materials, 2000. 

2. What information do you not now receive from government that your membership/clientele often 

need or want? 

Public popular consumer information documents that come from various federal agencies and timesensitive documents. 

 

3. What kind of government information resources does your association, society, or other kind of 

organization, most heavily depend on to meet the needs of its membership/clientele? 

Public popular consumer information documents that come from various federal agencies, and 

research and statistical information from various federal information/referral centers. 

4. What changes in the government's laws, policies, programs, or practices governing the 

dissemination of information to the public might you recommend, which NCLIS, in turn, might be 

able to recommend to the President and the Congress in its final report? 

The questions that we would ask you to pose "If it's readily available to the public, how are you 

providing it in special format? Who is the person to contact who will help provide the special format 

material for the various agencies? We would ask you to consider recommending: 

• that a contact always be trained to help each agency; 
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• that the reforms include flexibility to allow for the dissemination of government information in 

accessible formats such as audiotape, braille and computer diskettes on an as needed basis for 

special needs population; and 

• that the federal government always have an office where any agency can get training on providing 

accessible formats. For example, the U.S. Senate and U.S. House of Representatives have a special 

information needs office that helps each senator and representative respond to clients. Somewhere 

there should be an office to liaison with all executive department agencies to assure training and to 

help the agencies respond to special needs populations. 

Finally, the passage of Section 508 of the Rehabilitation Act will make accessing government 

information via the Internet easier and more feasible for special needs populations, especially those 

with visual impairments. However, we encourage your committee to take note of a statement from the 

document Computer and Internet Use Among People with Disabilities published by Disability 

Statistics Center University of California, San Francisco: 

People with disabilities are perhaps the single segment of society with the most to gain from 

the new technologies of the electronic age. Yet they have among the lowest rates of use of 

these technologies. As a result, the potential benefits of computers and the Internet to the 

disability community are a long way from being realized. 

The problem is largely one of access. Many people with disabilities are poor and can little 

afford a computer capable of navigating the Internet, the specialized software they might need 

in order to adapt it to their needs, and the monthly charges imposed for access to the Internet. 

Many people with disabilities, whether elderly or not, lack an awareness of the potential 

benefits of this technology, an understanding that, for themselves especially, a computer and 

an Internet connection could become not a toy, but an important tool with which to gain 

greater independence and social integration. 

The advent of lower-cost computing--including the free computers that come with an extended 

subscription to an Internet service provider--may help to make this technology more available. 

Simpler user interfaces, 

which would encourage use by people who are less comfortable with the technology, might 

also help people with disabilities to overcome any resistance they might have to exploring the 

Internet. But it seems clear that, in order to clarify the benefits that this technology can offer to 

the population with disabilities, a concerted program of education will be needed, along with 

training and support in the use of the hardware and software, before significant progress is 

made in closing the enormous gaps in technology access that have been identified in this 

report. 

The full report is available from Disability Statistics Center, University of California, San Francisco, 

Box 0646, Laurel Heights 3333 California Street, San Francisco, CA 94143-0646 or from their 

website: <http://www.dsc.ucsf.edu/>. 

Prepared by (Mrs.) Freddie L. Peaco, 

Government Information/Volunteer Specialist 

National Organization on Disabilities (NOD) 

I've asked a couple of people in the office now, and the general consensus is that we don't have the 

appropriate experience attempting to locate government publications for any specific constituency to 
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answer your survey. we are not of grass-roots organization -- and thus have relatively little contact 

with people from "disadvantaged communities". We are in the process of attempting to become more 

Web focused ourselves, however, and there is some discussion about trying to access materials that 

certain constituencies might have a need for, and link to them from a central location. If we did so, the 

constituencies that we would primarily be trying to reach are business and volunteer groups, looking 

for information on how they can work most effectively to serve people with disabilities, as well as get 

the basics on the ADA and other legislation. That said, we would love to have an easy, Web-based, 

way to search through government materials -- especially materials that have to do more with the 

"how-to" part of disability work. 

Sorry that we cannot help you further. Other groups you might consider contacting are The American 

Association of People with Disabilities, the American Association of Retarded Citizens (the Arc) --

they have a governmental affairs office here in D.C. 

Prepared by Taylor Hines 

National Organization on Disabilities 

SHHH National Center on Assistive Technologies 

Thank you for contacting the "stakeholder" group of people with disabilities. I represent people with 

hearing loss via SHHH (Self Help for Hard of Hearing People). I will give you a quick answer now 

and perhaps we can respond in depth later. 

I recommend that you go to the Access Board website and read as much as you can about rules for 

Section 508 of the Rehab Act—Electronic and Information Technology, which includes federal 

government obligations regarding your WWW questions. I also recommend that you specifically visit 

the website of the World Wide Web Consortium regarding guidance for accessible web sites. Please 

let me know if you can't find these websites. 

Prepared by David Baquis, Director 

SHHH National Center on Assistive Technology