Paula Sobel, MA, CCC- SLP, is a speech-language pathologist at MossRehab. You would expect a person trained to work in that field to have an understanding of the communication difficulties experienced by people recovering from brain injuries, strokes, and other disorders. But sometimes it’s personal.
“I had an uncle who recently passed away from ALS (amyotrophic lateral sclerosis), the disease that many may recognize from the movie about Stephen Hawking’s life,” she said. “My uncle was a lawyer, and communication was critical to his profession. As his speech deteriorated, he became harder and harder to understand. People would come to the house to talk to him and to socialize. As his speech became more difficult to understand, these people became more and more uncomfortable. They would end up talking over him to others in the room. He would get so upset because they were talking around him and over him. It was really devastating.”
Informed by experiences like that, Sobel and fellow MossRehab speech-language pathologist Pippa Sigüenza, MS, CCC- SLP, have created a new Communication Literacy program to help educate members of the general public—helping them learn how to communicate with people who have speech, language and cognitive disorders. This program is called Communication Literacy: Setting the Stage for Successful Interaction.
People with speech, language and cognitive disorders can sometimes be hard to understand, but communication is a two-way street. Those of us on the receiving end of that communication need to meet them halfway. Failure to do so, as Sobel points out, is not just frustrating—it can cause deep emotional distress.
And those frustrating experiences can happen anywhere.
Sigüenza recalls when a young, tearful 35-year-old-man with aphasia (the inability to understand or express needs and ideas that resulted from his stroke) came into her office describing a traffic stop. The officer, unaware of the little-known communication disorder, assumed that because the young man could not state his name or verbally answer questions, that he was under the influence and subjected him to sobriety testing. The young man was embarrassed and frustrated. For that reason, Sigüenza says, “many of our patients now carry information cards in their wallets that define their communication disorder and the ways in which a listener/speaker can better communicate with the person … but it can’t stop there.”
We spoke with Sobel and Sigüenza recently to learn more about the program, which grew out of their personal and professional experiences.
Can you elaborate on the kinds of communications problems your patients encounter as a result of their impairments? What kinds of stories do you hear?
Sobel: In clinical practice, listening to our patients, and observing the actions of others, it has become clear that interacting with those with communication impairments and differences is a challenge for many individuals. The average speaker rapidly becomes flustered and uncomfortable when attempting to interact with people who demonstrate a variety of communication impairments and differences. The origin of this education program grew out of our need and desire to ease the process for both partners in the conversation.
Who is the audience for this program?
Sobel: Anybody who interacts with people with communication differences or disorders. In other words, everyone. The program educates the audience on a variety of speech, language and cognitive issues: these include aphasia, dysarthria (slurred speech), voice, fluency, alaryngeal speech (speaking without a larynx), non-oral communication, hearing, and cognitive disorders.
Sigüenza: There is very little education or understanding of these issues in the general public. It doesn’t matter what the situation is … it could be a grocery store, movie theater, hospital, bank, post office, or any other public place. Everyone can benefit from this education.
Sobel: What we have witnessed over and over is that when someone comes into contact with an individual with a communication disorder, particularly when there is a significant amount of difficulty, the typical person may get tense and nervous. They don’t understand the individual, and it creates anxiety, which serves to break down the communication even further. This is understandable. The Communication Literacy program is designed to give tips on how to better communicate.
So how does your program work?
Sigüenza: We define and provide video clips of the different disorders so the public has a better understanding of them. We provide and demonstrate functional strategies to help set the stage for more effective communication.
Would you expect to have enhanced communication to have any benefits above and beyond just the communication? Are there other benefits?
Sigüenza: The effects are far-reaching. The efficacy of this Communication Literacy program addresses both the speaker and listener in the communication exchange. Success is reflected in the positive exchange between the individual with a communication impairment and the individual with whom they are interacting. The training will enhance the typical speakers’ confidence in communicating with persons with speech, language, or cognitive impairments. The people we train will be able to respond more efficiently and effectively to the immediate and emotional needs of the individual with a communication impairment.
The ultimate goal of this program is to help those with a communication impairment more actively and independently participate in their lives. For example, in a hospital setting, patients will be more involved in setting their long- and short-term goals, discharge planning, medication management, and understanding of their medical diagnoses. In other everyday settings, it will assist the person in successfully engaging in their activities of daily living, such as at the store, bank, social events, etc. Overall, this education will smooth the process of navigating through the medical system and ultimately, the community at large, and empower all to be active participants in life activities.
To what types of audiences have you presented?
Sobel: We have been presenting the Communication Literacy program to the MossRehab inpatient staff at Elkins Park and the outpatient clinics throughout the Einstein network. The audience, thus far, has included frontline staff, secretaries, volunteers, occupational and physical therapists, recreational therapists, nursing, social workers, and physicians.
We’re scheduled up through September for additional educational programs. Our hope is to continue this on an ongoing basis—this information is something that needs to be repeated over and over again. Our hopes are that we can then move the program out into the Philadelphia community and the surrounding areas.