Consumers and professionals working together provide a powerful force for change. This paper describes the results of past cooperation between consumers and the American Speech-Language-Hearing Association and how such cooperation can be increased in the future.
Speech-language pathologists and people who stutter have much in common. Among other things, both professionals and consumers want:
Believing that professionals and consumers could work together more, American Speech-Language-Hearing Association (ASHA) formed a Consumer Affairs Division in 1988 to educate consumers of audiology and speech-language pathology services about their communication disabilities and to advocate on behalf of consumer interests within ASHA's corporate structure.
The Division started by increasing consumer access to information about communication disabilities and to audiologists and speech-language pathologists who could provide evaluation and treatment. ASHA promoted its toll-free telephone number (800-638-2255) in newspapers and magazines; began expanding its free educational material (brochures, booklets, information packets, and fact sheets); developed a computerized database of audiology and speech-language pathology programs nationwide; and initiated a newsletter (Let's Talk) for professionals to hand out to their consumers.
Both professionals and consumers were involved from the beginning. Professionals reviewed the content of educational material for technical accuracy, and consumers provided input on appropriateness and usability. Professionals were invited to self-identify their particular areas of expertise for the database so that consumers would have more information than what could be found in the Yellow Pages of their telephone books. The first issue of Let's Talk contained a listing of self-help and mutual aid groups for people with speech, language, or hearing disabilities that continued for the next four issues, and appropriate groups for a particular communication disability were routinely included in information packets about that disability. Consumers began to learn that ASHA was interested in their needs and wanted to help.
While all the above activities continued to grow, ASHA wanted to find out more about consumer needs and offer self-help groups the opportunity to get to know each other better. In 1990, ASHA invited national, regional, state, and local consumer groups to a National Forum on Consumer Rights and offered to pay part of their expenses for attending. Forty-two representatives heard Ralph Nader, nationally renown consumer activist, say:
The assertiveness of disabled groups and their representatives has as its most fundamental goal cultural change so that people can see the absurdity of it all, the narrow-mindedness of it all, people of all ages who look the other way and don't like to see a society that has in its midst and in its mainstream people who have disabilities . . .
Remember, in all our country's history, almost every major social progress movement has started with a few people with no offices, with no organization, but they reflected values supported actively or passively by large numbers of people and eventually they prevailed.
Attendees then listened to five leaders of national consumer groups, including the National Stuttering Project (NSP), describe their efforts on behalf of children and adults with speech, language, or hearing difficulties. The Forum ended with small group discussion that generated an extensive list of opportunities for ASHA to meet their needs better, including continuation of programs like the one they just attended.
Barriers to professional and consumer cooperation are not tumbling down, but are at least eroding. Each group is beginning to understand the mission, needs, and issues of the other group and the unique and important information that the other group can provide. Each group's methods and timelines for making decisions are better understood. Trust between groups is increasing, and any past negative experiences are becoming exactly that -- past.
Where can we go from here? Consumers and professionals bring distinct energies that, when harnessed together, become so great that change must occur -- change in systems of service delivery that are influenced by federal, state, and local laws, rules, and policies as well as by private enterprises like providers of health care plans; change to increase research in the nature and treatment of stuttering; change in public perceptions of people who stutter. As with any relationship, someone must make the first move. Consumers can contact professionals who have provided them with services and ask to become involved with local or state speech-language-hearing associations. Or, ASHA has state listings. Professionals can contact Parent Information and Training Centers, Developmental Disabilities Councils, and chapters of self-help groups in their states. ASHA can help with this information too.
Once professionals and consumers find each other, they can:
Professionals and consumers may not always agree or be able to reach compromise, but they certainly should work more together on the many issues where they share a common stance.
Clients as consumers receiving audiology or speech-language pathology services have:
The Right to be treated with dignity and respect
The Rightthat services be provided without regard to race or ethnicity, gender, age, religion, national origin, sexual orientation, or disability
The Right to know the name and professional qualifications of the person or persons providing services
The Right to personal privacy and confidentiality of information to the extent permitted by law
The Right to know, in advance, the fees for services, regardless of the method of payment
The Right to receive a clear explanation of evaluation results; to be informed of potential for improvement; and to express their choices of goals and methods of service delivery
The Right to accept or reject services to the extent permitted by law
The Right that services be provided in a timely and competent manner, which includes referral to other appropriate professionals when necessary
The Right to present concerns about services and to be informed of procedures for seeking their resolution
The Right to accept or reject participation in teaching, research, or promotional activities
The Right to the extent permitted by law, to review information contained in their records, to receive explanation of record entries upon request, and to request correction of inaccurate records
The Right to adequate notice of reasons for discontinuation of services; an explanation of these reasons, in person, upon request; and referral to other providers if so requested
These rights belong to the person or persons needing services. For sound legal or medical reasons, a family member, guardian, or legal representative may exercise these rights on the person's behalf.