This is from the web site http://www.dinf.org, which contains most of the
papers presented at the adapted technology conference sponsored by
California State University at Northridge and held in Los angeles in
March. I will be posting other papers of interest to local blind
computer user groups in the next few days. This one addresses some of
the issues of providing quality information and referral on adapted
technology. As end users, we may be familiar with much of this, but many
will find a few new ideas.
kelly
CSUN 98 Papers
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:[log in to unmask]
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?
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