DISABILITY ISSUES
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.

Access/Accommodation                                       Health Care /Treatment

Communication                                                      Housing

Disability /Disabling Conditions /                          Human Relations

          Chronic /Illness                                               Information /Resources      

Education                                                                     Law / Rights                                                                  

Employment                                                                  Personal Care/Basic Needs              

Equipment /Assistive Technology                       Recreation

Finance /Entitlements                                                  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. Persistence!

Where to Look

Telephone Book

Your telephone book is, in fact, a resource, not just the white pages but the special sections which list community and government services.

Human 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 local library.

Government

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.

Independent 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.

Hospitals and HMOs

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.

Disability Specific Organizations

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.

Work

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.

Library

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.

Schools

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.

Internet

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 net".

Support Groups

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.