Vol. 21 No. 2
How to Find What You Need
by Nancy C. Schock, President
The Information Center is not currently able to provide the
type of Information Service it knows is greatly needed. Therefore, we are
reprinting the following article from a previous edition in an effort to help
information seekers and providers.
This issue's special message contains ideas that may be
useful to you in seeking your own information.
When exploring possibilities for yourself or a loved one to
participate fully in life's activities you need specialized information. People
facing disability are often unsure of where to look for this information, or
what questions to ask. Furthermore, they frequently do not realize that they can
or should be seeking life enhancing information. The issues raised by disability
affect so many aspects of life that the range of possible solutions together
with the rapid changes being made today present a daunting prospect for people
seeking useful answers.
My first suggestion is to start exploring early with an open
mind. You will be surprised at what is available. You can obtain information
from many sources, such as knowledgeable individuals, agencies, or
organizations, printed materials, the Internet, or by attending meetings or
conferences. At some point, in your search, you will benefit from consulting
with people who have lived or are living with the same situation as yours in
order to learn how they have managed. Their solutions may not be right for you,
but they will give you ideas of options and alternatives.
The subject categories into which the Center divides all
information appear below. Seeing them may help you decide what issues to
consider and how to organize the information you find so that it will be most
useful to you.
Disability /Disabling Conditions /
Law / Rights
Personal Care/Basic Needs
Equipment /Assistive Technology
Transportation / Travel
If you need help deciding what questions to ask, you can
think of situations or activities in your life that are affected by disability
and how you would like them to change. Think positively, assume that there is an
answer. You have only to find the answer which works for you. Remember no one
person or one organization has all the answers. Persistence is the rule.
Where to Look
Your telephone book is, in fact, a resource, not just the
white pages but the special sections which list community and government
Services Yellow Pages
This special "telephone" book which lists human
service agencies, private organizations, and other groups dedicated to meeting
the special needs of people living with disability, should be available at your
All states and many cities have at least one office
dedicated to the needs of people with disabilities. In Massachusetts these
include the Massachusetts Office on Disability, Massachusetts Rehabilitation
Commission, Massachusetts Commission for the Blind, Massachusetts Commission for
the Deaf and Hard of Hearing, Massachusetts Commission on Mental Health, and
others. Call any one of them and ask them to refer you to the resource you need.
Living Centers (ILC)
ILC's are essentially self-help centers that are run and
staffed by persons with disabilities. They offer some or all of the following
services: attendant care, coordination of personal care attendants,
transportation, counseling, information and referral, independent living skills
training, and self-empowerment. Most important, you will find people who have
faced and understand questions very much like those you are dealing with.
Recently the health care organizations have begun to take a
more active role in many more areas of health. Your local hospital or HMO is
likely to have a great deal of information on disability, hot lines for
information, "talk to a nurse" programs, and a wide range of support
groups. Call your provider first and then call every health care provider in
your area until you find programs and services that meet your needs.
Most major disability related organizations focus on one
disability, or perhaps several related disabilities. These national
organizations, such as the Multiple Sclerosis Society, usually have local or
state chapters which you can contact. They have publications, meetings, and
conferences which can provide both resources and networking opportunities. While
many concentrate on research and education, others provide direct services to
individuals with "their" disability. Do not overlook this resource.
Because of the passage of the federal Americans with
Disabilities Act, most employers have assigned someone to be the ADA Compliance
Officer. This person can answer many disability related questions and access or
refer you to resources. If your, or a family member's disability is affecting
your job, talk to your human resource office.
Your library and the librarian are resources. They have
books on disability, resource guides, publications of disability organizations,
and effective catalogs to help you find them. In addition, today, many can give
you access to the Internet. Many libraries also offer services such a text
readers, large print publications, books on tape, and captioned movies.
With new laws and growing awareness the school has become a
disability resource. The school nurse, guidance and special education staff can
offer information and referrals. Colleges have centers and programs for students
with disabilities. You do not have to be a student or have a student in the
school to seek their advice.
The Internet not only has a wealth of disability related
information, it may have too much. If you search the Internet with the word
"disability" it will take hours just to read the titles of the sites
you will find. However, if you have a good browser and ask specific questions
you can find unlimited useful resources. One of the nice things about the
Internet today is the number of people who love to spend their time
"surfing". Feel free to ask even a casual friend who is
"into" the net to search for you, more likely than not they will be
very happy to have a mission to justify the time they spend "on the
There are hundreds of support groups that focus on specific
disabilities. They are made up of people just like you, persons with
disabilities and their family members. They often have local meetings where
people gather to share experiences and information. They can give you the
opportunity to ask questions and share solutions. You can find them through the
disability-specific organization, the community events section of the newspaper,
a local hospital, or the Human Services Yellow Pages.