2001 Conference Proceedings

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A Human Face

Pauline Diego-Aguilar
International Center for Disability Resources

Introduction

A Personal Investigation and Solution to the Use of Internet Disability Resources

This paper is the description of a personal investigation into the use of Internet resources to assist people with disabilities. It investigates the plethora of resources that exist and the need for focused repositories for these resources. It is presented from the perspective of someone who needs these resources in their everyday life. The point of view presented is that of a family caregiver, a person who is assisting family members to deal with disability situations and to find urgently needed resources and information to deal with various disability-related problems.

It also presents what the author feels is one solution to the tremendous number of resources available on the Internet in this venue and how they can be presented in a manner that is useful to the people who need them the most.

Issues that Apply to All of Us

As the population ages many people find themselves in the situation where they may be caring for both parents and children. In fact, in some cases they may be caring for parents, children and a disabled spouse. With the aging of the Baby Boomers, one or more aspects of the above scenario are becoming more and more common.

When faced with this situation, what are the options for finding resources? Where do you look, and how do you find the needed resources? How can someone untrained to deal the bureaucratic realities of HMO's Medicare, and other government and healthcare organizations use these resources in a manner that will assist those who need them? With limited resources to handle these situations what is the solution or process to take advantage of what is available?

The Internet Catalyst for Change

As E-government and the Internet expand there are many more resources online than are usable by those who have access to the Internet. In some cases, these resources are more usable via electronic means rather than via telephone or face to face meetings. Although many of these resources are available via electronic means, for a persons with limited resources and limited time there are other significant problems.

A Digital Divide within a Digital Divide

The location of the needed resources is a major problem that must be solved. Just as in the "real" world, the location of the proper resources is the first step in finding the solution to the various issues that must be handled. Certainly, Internet online resources should be easier to find and use. There is no question that being able to stay in one place and gather the necessary resources would be more advantageous than calling and visiting State and Federal Agencies or contacting HMO's and other health related resources via letter and phone.

The problem that existed was in the fragmentation and non-focus of these resources. At one point there existed a great need for a central repository organized from a user's point of view and dealing with disability resources that were presented in an accessible manner.

While the use of search engines helped to find resources, not everyone is a adept at the use of search engines nor are they expected to provide validation of these resources to ensure currency and usability for visitors.

Awakening and Realization

Creation of an Online Resource

It became apparent that there was a great need for a web resource that would gather and validate Internet disability resources including those that were focused on older citizens. This resource would focus on a broad range of issues, and have a global reach. It would need to be organized in a manner that is usable by everyone, and the resources would need to be presented in an accessible manner.

As I gathered and collected the resources to assist in my particular situation as a caregiver, I soon realized that this collection would be useful to others. While these resources exist in the virtual world, the people who need them exist in the real world and why should they not have the benefit of the research done by others?

Since the resources would have to be gathered and accessed on an on-going basis, it would serve many people to have these resources gathered, organized and presented in a manner usable by the largest number of people.

In 1998 when the effort to gather these resources began, it was became apparent that the growth of the Internet was not to be a short-term phenomenon and that many disability-related organizations were moving major portions of their user contact resources to the World Wide Web. This only intensified the need for focused, organized collections of these resources presented in an accessible manner usable by the largest number of user possible.

The creation of such a resource would essentially create a portal devoted to disability resources usable by anyone needing these resources disabled or not and no matter what their location. This would create a resource that would make not only a significant online contribution as well as providing help for flesh and blood human beings with real needs in the real world.

Birth of ICDRI

Since no online resource existed that completely or partially filled the needs that had become apparent, the decision was made to create such a resource. As a result, the International Center for Disability Resources(ICDRI) was launched in November of 1998.

The original plan called for ICDRI to be self-sustained and privately funded. The Center would have a global scope, with a mission of collecting and presenting disability resources in an accessible manner.

ICDRI would develop products and services such as:

As the implementation of disability laws related to web and electronic and information technology proceeds in the U.S. and other areas of the world, this type tutorial and assist assumes greater importance as time goes on.

Organization

In the course of gathering the resources, it became apparent that one of the keys to making them usable would be how they were organized. There would be several factors to take into account and these must be done with the user's perspective in mind.

Ease of Access

Being able to see what resources are available on the site and the categories into which they are organized makes it much easier for the user to be able to find the things they need. A simple, clear user interface allows users to quickly determine where they needed resources exist. Summary pages help the user determine whether or not the resources they have picked will meet their needs.

Ease of Use

A site that has a consistent and easily understood user interface that made navigation easy was needed. Complex search engine technologies and a user interface that was difficult to use would make things difficult for site visitors. The design of the site sought to avoid these pitfalls.

Virtual Organization

The organization of the resources on the site is such that it uses categories to organize the resources and many resources appear in more than one category. The resources are presented for the most part on summary pages that tell the user about the resource so they can make a decision about the usefulness of the resource to them. This also helps with the physical organization of the resource and assists with search engines placing specific resources in specific categories.

Physical Organization

The physical organization is based for the most part on the summary pages of the individual resources. Other types of pages exist, however the baseline organization is built around the resource pages which summarize the specific resources, or present the entire resource in the case of certain papers and presentations that have been collected and or published.

This allows for future technology to access these resources on an individual basis and will allow for conversion of these resources to a different physical type of media if needed.

Presentation of Material

Given the current state of the art amongst browsers, the material is presented in an accessible manner using HTML technology. Plans are in the works to upgrade this technology when assistive technology and browsers are more able to cope with some of the advanced technological methods being developed.

Process

The current process for placing resources on the site involves the following:

Resource Validation

The existence of all resources is validated as the first step including any resource in the collection. This is critical and resources are re-validated on a regular basis.

Content Validation

Accuracy of content is also validated. Inaccurate content is not included in the collection of resources on the site.

Establishing Networks and Relationships with other Organizations

In order to create accurate content, keep abreast of developments and have resources to present to our visitors, the Center works to create ongoing productive relationships with other organizations that are in the disability venue. This helps to insure that resources presented to users are accurate and that news about disability issues is accurate and timely. It further helps to promote ongoing conversations about the needs of the disability community and how those needs can be served.

Constant Updating of Content

Content is updated on a ongoing and constant basis. The quick pace of events in the disability community and the changing technology involved with disability issues demands that content be updated on a daily basis.

Monitoring Technological Developments

The rate of change in the technological world is driving a high rate of change in the areas where technology is involved with disabilities. This requires constant monitoring of this area. This monitoring is done in both technological areas and in the areas of global legal and policy developments related to changing technology. As the technology changes and develops so much the policies related to the technology and disability issues. The Center has been involved in several press releases and has published commentaries on changing technology that effects how the disability community is affected by technology. The Center will continue to monitor and publish information in this area.

Making Sure Content Has A Positive Impact on those who need it.

The Center firmly believes in and promotes the idea that accessibility of resources has a positive effect on everyone regardless of disability or not. To promote this idea the Center has begun the publication of Independently produced papers that are designed to help organizations implement accessibility in a positive and cost effective manner.

Presentation of Current News Items

As of this writing many important developments are taking place in the disability community. Not the least of these is the Initiatives announced by the U. S. President and the programs related to this announcement. The Center is devoting resources to presenting this information to all who need it and keeping it as current as possible. The Center also seeks to provide similar information on events in other parts of the world so that visitors to the site will understand the issues on a global basis.

Conclusion

The International Center for Disability Resources on the Internet has grown from a project that was based on a personal need, to an Internet resource that draws an audience seeking help from around the world. Originally, the needs were based on personal experience, but today a wide variety of relationships and resources exist to help the Center expand its collection and present resources to visitors. The role and scope of the Center's activities is expanding, but its mission remains the same:

To empower people who need disability resources to take charge of their lives and situations through access to needed information and resources.

References

The International Center For Disability Resources on the Internet

www.icdri.org

People with Special Needs and the Internet Harris Poll
How the Internet is Improving the lives of Americans with Disabilities

President Clinton and the Digital Divide Speech
Speech - http://www.icdri.org/clintonddspeech.htm 
Trip - http://www.whitehouse.gov/library/hot_releases/Thu_Sep_21_142204_2000.html

The Collected Works of Cynthia Waddell
http://www.icdri.org/cynthia_waddell.htm

An Overview of Law and Policy for IT Accessibility
http://www.icdri.org/SL508overview.html

Global Policy Issues
http://www.icdri.org/global_legal_resources.htm

Web Accessibility Guidelines and Reccomendations W3C
http://www.w3.org/WAI

The AWARE Center
http://aware.hwg.org/


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