Web Posted on: February 24, 1998

DATA SOURCES FOR ASSISTIVE TECHNOLOGY INFORMATION AND REFERRAL

By Judith F. Clark, MPH
Information and Resource Coordinator
Hawaii Assistive Technology Training and Services (HATTS)
414 Kuwili Street, Suite 104,
Honolulu, Hawaii 96817
Phone: 808-532-7110 (Voice/TDD)
Fax: 808-532-7120
E-mail:bfl@pixi.com
Internet Web Page: www.hatts.org

INTRODUCTION

Information and referral is the process of linking people with resources. 'All too often, people become confused or discouraged by the complexities of the {human services} system, and they never find out about the programs and services that might be able to help them solve their problems. Because they don't get help, bad situations tend to get worse, and our society pays the price. Information and referral breaks that cycle by providing a simple way for people to find out where they can turn and what they can do to help themselves.' {Florida Alliance of Information and Referral Services, 1997, (http://flairs.org)}. Even in a small state such as Hawaii, there are literally thousands of health and human service programs and more than one hundred resources for assistive technology products and services.

An information and referral specialist acts as a guide to help people assess their needs, explore their options and make informed decisions. The goal of information and referral is to enable people to help themselves.

Information and referral workers must be good listeners, non-judgmental and caring. They need good communication skills, lots of empathy, and the patience to allow persons with disabilities to make their own choices and decisions. The process of information and referral is 'a personal experience, reflecting a combination of skill, luck, imagination, and curiosity.' {R.F. Jack, 'Meatball Searching: The Adversarial Approach to Online Information Retrieval Database,' Database, December, 1985.} And key to the information and referral process is accurate, up-to-date and well-organized information about assistive technology.

In this presentation, I will discuss the types and sources of assistive technology data needed to provide high quality information and referral services. In addition, I will address the issues of how to organize and maintain this information.

TYPES OF INFORMATION NEEDED

In order to provide effective assistive technology information and referral, four types of data are needed.

First, you need product information--what devices are available both locally and through mail order, descriptions of their features and functions, their limitations, what functional abilities or training are needed to use a product effectively. And, of course, the price.

Secondly, you need to know about vendors--what products they sell, their policies and practices.

You need information about services--assessments, repair and maintenance, training, user support, advocacy, legal and so on.

Finally, you need information about funding--policies and practices of major funding sources including public schools, health insurers and vocational rehabilitation programs. In addition to major funders, communities usually have a variety of small pockets of money to fill the gaps. These include service clubs such as the Lions Clubs, which have a special interest in vision needs. Other sources include foundations that provide assistance to individuals and student organizations (Engineering students could build a wheelchair ramp as a class project, for example.).

USING RESOURCE SYSTEMS EFFECTIVELY

In addition to knowing what products and resources are available, information and referral workers need to know how the system works. In order to obtain services quickly and efficiently, people need to know about an organization's application process. Does the user need an appointment or does the agency accept walk-ins? What documents are needed--certification of disability, proof of income, etc? How long does it usually take before services begin or products are delivered? Does the agency have bilingual staff? How accessible is the office? Without this information, time may be wasted and people may be frustrated and give up their attempts to obtain needed assistive technology.

Good information and referral workers are also aware of informal systems and resources. They cultivate and nurture key contacts in their communities--a staff member at an agency who is most knowledgeable and helpful, consumers who are experienced users of AT and willing to share their expertise; vendors who will accept special orders or make special arrangements.

Workers need to be creative thinkers who are not limited by a caller's perception of the situation. Products that are not usually considered assistive devices may be a good solution to a particular need.

A woman who is blind and has a young child wanted to participate in reading her daughter's picture books. Her husband could record the words on tape and she wanted to outline the pictures with raised lines. The lines had to be permanent so the baby would not peel off and eat them, and match the color of the picture so it wouldn't interfere with the child's enjoyment. After looking through catalogs of vision products without finding a satisfactory answer, I remembered my own experience of decorating T-shirts with fabric paint. The wide variety of colors made it ideal for this purpose.

DATA SOURCES

The Internet offers a wealth of information about assistive technology. The single, most useful web site I have discovered is ABLEDATA. The ABLEDATA database currently lists more than 23,000 products from approximately 2,600 domestic and international manufacturers and distributors. Using ABLEDDATA, searchers may locate such varied devices as alternative computer keyboards, talking clocks, golf clubs for wheelchair users or adapted clothing. Commercially available products, as well as prototypes and do-it-yourself devices are listed. Users may search by keywords, product names or company names. Each product listing includes a detailed description of the device, contact information for manufacturers and distributors, pricing when available. The information is updated on an ongoing basis.

For people without Internet access, the Trace Center offers the database on CD-ROM. Another alternative is to call ABLEDATA's telephone helpline. An information specialist will do a database search for the caller, at no charge.

Many manufacturers and distributors maintain web pages, good sources of up-to-date product and pricing information. Some feature on line ordering or e-mail to allow you to request catalogs or brochures. Browsing these manufacturer sites s a good way to add to your list of available products.

On line bulletin boards at disability sites allow users to post messages. Persons with disabilities and family members often offer feedback, both positive and negative, about assistive technology products they have used. These comments offer valuable insights into real life usefulness of various devices and tips for using them effectively. While they should not be your sole source of information about a device, they do provide another point of view.

It is critically important to collect information about local vendors and assistive technology services. Generally people prefer the more personalized experience of purchasing locally, and customer support and training is more easily obtained. If there is a problem with a defective device, it is easier to arrange for repair or replacement. Furthermore, local vendors can provide live demonstrations of the products they sell, giving the prospective purchaser a better idea of how the device actually functions and an opportunity to try it out before purchasing.

One may start to collect data on local vendors by looking through the phone book yellow pages in categories such as medical equipment, automobile hand and foot controls, hearing aids and assistive devices, or door opening devices. Do not overlook rental stores that often offer such items as wheelchairs and shower stools.

You then need to survey these vendors to obtain such information as:

• Type of products they sell;
• Geographic area they serve;
• Their hours of service (including emergency coverage if any);
• Heath insurance coverage they accept, if any (Medicaid, Medicare, etc.);
• If they provide installation, training, user support, repair or maintenance services;
• Whether they offer home delivery;

Meeting with local vendors provides opportunities to build relationships. You can provide feedback to the vendor about additional assistive devices that are in demand in your community. They can refer consumers to you to find out about assistive devices that they do not carry. You may be able to display your brochures or posters in their stores or offices or even obtain loaner devices for display and demonstration in your office.

Vendor catalogs are another major source of information on assistive technology devices. At HATTS, I maintain a computer-based catalog file with information from about 600 companies. They are organized into major categories such as mobility, hearing, education and computers. If someone requests information on a specific product, I photocopy a few pages along with the order forms. When the caller is concerned about a range of products, I may give the individual complete catalogs through which he or she may browse. This is particularly helpful for persons who are recently disabled and new to the idea of assistive technology. Some manufacturers will provide copies of their brochures and catalogs in bulk upon request.

I have created a catalog database. From this I can generate mail lists to request additional copies of catalogs. I can provide lists for consumer of vendors who offer various types of products, and print summary lists so I can quickly determine whether I have information on a specific manufacturer or distributor and where to find their catalog in my files.

Subscriptions to disability magazines such as Exceptional Parent, New Mobility and Mainstream are a useful source of data. They may feature articles on how to select various kinds of AT and their advertisements can alert you to new products.

Other agencies may be key information sources for you, particularly other information and referral organizations. Most communities have a generic information and referral hotline, which is often operated by the local United Way. You may also find specialized hotlines for seniors or persons with disabilities in your community. State or county governments usually have an information service to link people with government agencies and the Federal Information Service has a national toll-free number with information on all federal programs and services. If you experience difficulty in locating information and referral programs in your area, contact the Alliance of Information and Referral Systems (AIRS), the national organization for this profession (PO Box 31668, Seattle, WA 98103; Phone: 206-632-0855; Web page: www.airs.org).

In addition to providing telephone or walk-in information about services, information and referral centers often publish directories of services in their community. Other organizations publish useful national directories such as 'Computer Resources for Persons with Disabilities', published by the Alliance for Technology Access, and 'The Complete Directory for People with Disabilities', available from Grey House Publishing. Be aware that the information in any directory of health and human services becomes outdated quickly so you will need to purchase updated copies every year or two.

Every state and U.S. territory has a federally funded assistive technology project. They are an excellent source of information about assistive technology services and products. Many of these projects maintain Internet web sites.

CONCLUSION: CONSIDERATIONS FOR PLANNING YOUR INFORMATION SYSTEMS

Creation of an information and referral data system is done in three stages: design, data collection, and ongoing maintenance. When planning your own assistive technology data system, remember that the system is only as good as the accuracy of your data.

Data must be kept up-to-date on an ongoing basis. In a comprehensive information and referral service in Honolulu, more than ninety percent of the 3,500 resources in their agency database had changes in a one-year period. 'Maintenance of this type of information is labor-intensive, time-consumer and costly, and communities cannot afford to pay for duplication of effort.' {Georgia Sales, 'The role of Information and Referral in the National Information Infrastructure,' Info Line of Los Angeles, 1995, p. 3.}

Finally, here are some key questions to consider when planning an assistive technology resource system:

• What information do I need? What is my purpose for collecting this information?
• Who is going to use the data: your staff, other service providers, consumers?
• What am I going to do with the information? How do I need to sort and retrieve it? What kind of reports do I want?
• Is there a source I can tap that has already collected the information I need? Am I duplicating another person's efforts?
• What methods should I use to collect the initial data?
• How am I going to keep this information accurate and up-to-date?
• Do I have the resources needed to maintain my resource information files: people, technology, space?