Consumer Self-Help and Professional Associations
About the presenter: After receiving his Ph.D. from Purdue University, Charlie taught for seven years in speech-language pathology and audiology departments at the State University of New York at Plattsburgh and the University of Maryland, College Park, and practiced as a speech-language pathologist. Charlie has been a staff member of the American Speech-Language-Hearing Association's (ASHA) National Office for more than 18 years. Currently ASHA's director of Consumer Advocacy, Charlie has also served as Assistant Director, Clinic and Hospital Program; as Director, Speech-Language Pathology Branch; and, as Deputy Executive Director of ASHA's consumer affiliate, the National Association for Hearing and Speech Action. Charlie has authored nine journal articles, written or edited five books or book chapters, and made 42 presentations, most recently at the Second World Congress on Fluency Disorders and the annual meeting of the National Stuttering Project.
Consumer Self-Help and Professional Associations
by Charlie Diggs
Maryland, USA
Abstract
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:
- positive outcomes of the services provided/received;
- enough sessions of treatment to deliver these outcomes;
- results that are a permanent part of real-life communication;
- respect for the unique points of view that each brings to evaluation and treatment;
- schools and health care plans that provide quality services from the most qualified providers.
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 Beginning
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.
The Middle
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.
- ASHA more than listened. It took actions like those below:
- Consumer dialogues are held every other year to determine how consumer needs and priorities have shifted.
- Joined by the Stuttering Foundation of America, ASHA organized a press conference to protest a John Hancock Mutual Insurance Company television commercial that inaccurately portrayed a child who stutters and to encourage John Hancock's inclusion of outpatient speech-language pathology as a basic health benefit in their company's plan.
- A Model Bill of Rights for People Receiving Audiology or Speech-Language Pathology Services (see appendix) was developed as an official statement of ASHA, five years before U.S. President Bill Clinton thought of the need for a Patient's Bill of Rights.
- Consumer grants are awarded every year to recognize the value of self-help groups in the lives of people with communication disabilities and to assist these groups to meet their own organizational goals. In 1996, the NSP conducted national "Year of the Child" symposia with support from one of these grants.
- ASHA increased its presence at annual meetings of self-help groups, including the NSP, the National Council on Stuttering, and the Speak Easy International Foundation.
- ASHA now collects consumer satisfaction data as part of its National Center for Treatment Effectiveness in Communication Disorders.
- Consumers can now join ASHA's Special Interest Divisions like Division 4, Fluency and Fluency Disorders.
- Consumers serve on several ASHA Boards and Committees, e.g., the Governmental and Social Policies Board.
- Consumers can now look forward to specialty recognition in areas of audiology and speech-language pathology practice like fluency and fluency disorders.
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.
And There Is No End
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:
- exchange publications routinely and offer to write articles for each other's publications
- include each other on policy-making bodies and committees (Consumers may want to establish a professional advisory group; professionals, a consumer advisory panel)
- attend each other's meetings providing reduced registration rates if necessary
- work on public relations activities
- work with colleges and universities to educate students about the importance of profesional-consumer collaboration
- advocate together for changes in public policies
- do many other creative and cooperative projects.
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.
Appendix
Model Bill of Rights for People Receiving
Audiology or Speech-Language Pathology Services
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.
September 8, 1998
