Interview with Joan Peters Esq., Executive Director, National Aphasia Association
ISBN 0-9758539-0-2
www.aphasia.org
1-800-922-4622
Beck: Good Morning Joan. It's a pleasure to speak with you.
Peters: Hi Doug. Thanks for the invitation
Beck: Joan, if you don't mind, would you please tell me a little about your professional background?
Peters: Sure. I graduated from the University of Michigan Law School in 1988. After graduating, I developed an interest in disability issues and I worked for an independent living center in the Bronx for five years before joining the National Aphasia Association (NAA).
Beck: Joan, would you please give me an overview of the National Aphasia Association?
Peters: The National Aphasia Association was created in 1987 by Martha Taylor Sarno. Our primary focus is to help bridge the information gap for people with aphasia. The lack of services for people with aphasia was, and still is, significant. In 1987, there were few sources of information available for people with aphasia and their families. In fact, the majority of stroke survivors with aphasia are not even told their communication disorder is called aphasia!
Beck: So in other words, stroke survivors with aphasia were leaving the hospital, knowing they had language or speech problems and knowing they had had a stroke, but not knowing the term "aphasia?"
Peters: Exactly. So it has been very difficult for individuals and families to find the help they need. Imagine trying to get help on the Internet or even in a library without knowing the term "aphasia." So one goal for us has been to get the word "aphasia" into the mainstream and to let people know we're here to support them. We also want to let people know that community resources are available. The NAA did a survey in 2003, which found the most frequently cited need of people with aphasia, was to have greater understanding and public awareness of aphasia.
Beck: Very good Joan. Would you please tell me your definition of aphasia?
Peters: By "aphasia" we mean acquired language and communication deficits which generally occur following a stroke or other brain injury. We use the terms "fluent" and "non-fluent" to describe the two primary forms of aphasia. Fluent aphasia means the patient speaks fluently although their speech may not make sense, but their comprehension ability and skills are impaired. In non-fluent aphasia, comprehension ability and skills are OK, but expressive ability is impaired.
Beck: I recall as an undergraduate in communication disorders, we used the term "expressive aphasia" which I suppose is essentially the same as non-fluent, and we used "receptive aphasia" which seems to be fluent aphasia? I think your terms are better as they are less finite and they acknowledge that aphasia is not just A or B, but has broader, more global implications. What are the most common causes of aphasia?
Peters: Probably the three most common causes of aphasia are stroke, traumatic brain injury and brain tumors.
Beck: And the primary treatment or management option for aphasia is?
Peters: It's usually speech and language therapy provided by speech language pathologists (SLPs). The American Speech Language Hearing Association (ASHA) is involved with aphasia and they have been a great resource for patients and professionals too. Many people find joining Aphasia Community Groups helpful as well.
Beck: Joan, what can you tell me regarding insurance and the provision of SLP services for aphasia?
Peters: Insurance issues are very important, but they are variable and somewhat difficult for people to navigate. Medicare Part B does cover speech therapy but as a practical matter, coverage tends to be limited. Obviously, commercial insurance varies based on your particular policy. One very important issue for aphasia patients is the insurance "plateau." Once they reach the plateau, the insurer may not pay for additional services, even though the patient may at some later point benefit from additional services So the best thing for the patient and the family is to understand their individual insurance coverage, and to work with their insurer to be sure they understand how to file, what's covered and what their options are.
Beck: I suppose the majority of people who have strokes in the USA are retired?
Peters: Yes, about 2/3rds of the people who have strokes are over age 65, but of course, strokes can occur in young people too.
Beck: We know that strokes may accompany high blood pressure, heart problems, hardening of the arteries, high cholesterol, diabetes, a lack of exercise and a host of other problems too.
Peters: Yes Doug. That's correct. And again, this is why it's so important for people to understand what aphasia is, how it relates to stroke and other disorders, and to know that specific and variable rehabilitation and management options exist.
Beck: OK...thanks for the background information Joan. Before we run out of time, it's probably a good idea to talk a little bit about the book! "The Aphasia Handbook: A Guide for Stroke and Brain Injury Survivors and Their Families" (ISBN 0-9758539-0-2) is very easy to read and is a comprehensive text for patients. It covers the entire range of subjects related to aphasia.
Peters: Yes, thanks Doug. The book is written for patients, but we think it's a wonderful resource for SLPs to use with their aphasic patients in hospitals and clinics. As we were just discussing insurance, it's nice to be able to give the book to patients who have limited resources, so they'll be able to better understand what aphasia is, the impact it has, and what community or low-cost options may be available to them.
Beck: I agree. It would be a fabulous handout and an excellent resource for the patient and their family. Joan, can you give me a brief overview as to the cost and the content of the book?
Peters: Yes, the book came out in the fall of 2004 and is $29.95 for consumers and $49.95 for professionals/institutions. It can be purchased through the NAA's website, www.aphasia.org or by calling 800-922-4622. It was edited and adapted by Martha Taylor Sarno and myself. The book covers many topics, such as independent living centers, your rights as an employee, sick leave and the Family Medical Leave Act, Vocational Rehabilitation issues and counselors, and many personal and pragmatic issues relating to living with aphasia, travel issues, personal relationships, and the book covers choices and rights too. We list many resources and organizations with their phone numbers and contact information, we have a glossary, useful websites and related national and local groups too.
Beck: Thanks so much for your time and knowledge Joan. I am very impressed with the book and I appreciate your taking the time to speak with me about this topic. I think the book is extraordinarily useful for patients and professionals and I urge everyone addressing aphasia to be sure to obtain a copy.
Peters: Thanks Doug. I appreciate the opportunity to speak with you about this topic, and thanks for your time too!
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For more information, please visit www.aphasia.org
Toll free phone number 1-800-922-4622
