By Charlene N. Rivera-Bonet | Waisman Science Writer
Baba came home from school and using his iPad told his mom, Awa, that his teacher’s house had caught on fire. Baba’s message left Awa astonished and skeptical, not only because of the content but because of Baba’s ability to relay it. Baba has cerebral palsy and uses an Augmentative and Alternative Communication (AAC) device to communicate. Up to this point, Baba typically only communicated basic phrases. “And then for me to confirm the news. It was game changing. And I was like, “dude, there’s so much more you can do. I can’t believe that you can accurately relay a message of this magnitude’,” Awa says. Baba also expressed his emotions and said they should get flowers for his teacher.
Baba received his communication device from the Communication Aids & Systems Clinic (CASC) at the Waisman Center, University of Wisconsin-Madison. This clinic has a team of speech-language pathologists (SLP) and occupational therapists (OT) that provide highly specialized, cutting-edge AAC for children and adults experiencing significant communication challenges. AAC refers to multiple ways to communicate that can supplement or compensate for impairments in speech.
“Without access to communication, people are isolated and frustrated and can end up having very different life experiences. If we can establish communication for a variety of individuals using alternative tools and techniques, and in so doing, increase that individual’s quality of life, I think it’s a pretty substantial impact,” says Jennifer Seale, PhD, CCC-SLP, speech-language pathologist and director of CASC. Seale became director of CASC in late 2021.
CASC serves individuals across the lifespan with various disabilities or diseases such as Parkinson’s, amyotrophic lateral sclerosis (ALS), autism, cerebral palsy, Rett syndrome, some acquired disabilities, and more. “Basically, anything that impacts the physical ability to communicate through speech are the folks that we see coming through our clinic,” Seale says.
Origins of AAC at Waisman
The AAC programs at Waisman Center originated from the work of Gregg Vanderheiden, PhD, professor emeritus in the College of Engineering at UW-Madison. Vanderheiden established the Trace Center at the UW-Madison School of Engineering in 1971 and later moved to Waisman in 1977. He first led the establishment of the Communication Development Program (CDP), a partnership with Dane County Human Services focusing on the AAC needs of residents with developmental disabilities. He later established the Communication Aids & Systems Clinic (CASC) through a partnership with the UW Hospital & Clinics.
Vanderheiden was a pioneer in the field of AAC, and did research on how to better help individuals with disabilities communicate. Consistent with many areas at the Waisman Center, early work focusing on AAC evolved through experiences with consumers and families. His early work in AAC was inspired by Ludell Swenson, a boy with cerebral palsy who had no speech and experienced significant communication limitations using a communication board. This experience inspired the development of the first computerized communication aid that gave communicators more freedom to spell and use phrases to express themselves. It was a hefty tablet that sat on the lap of a wheelchair user.
“At that time, all of the devices were big and heavy,” says Julie Gamradt, MS, CCC-SLP, former director of CASC. Early devices could not be carried by communicators while walking. Fortunately, technology has advanced now offering a wide array of AAC systems that can address the diverse needs of AAC communicators.
When Gamradt started as a speech-language pathologist at CDP, the Trace Center was already expanding their focus to include the study of how a person with a disability could access computers. “Some of the stuff that’s built into today’s computers [for accessibility] started here at Waisman,” she says. In 1995, the Trace Center incorporated, for the first time, accessibility features into a PC-based system.
The AAC programs kept growing as the population of AAC communicators increased. Eventually, Vanderheiden left Waisman and moved the Trace Center with him, but CASC and CDP remained and continued to grow.
Gamradt directed CDP for 33 years and CASC for the last 16 years of her tenure at Waisman. “I think what I learned from Gregg in part was advocacy. Not only did you serve people with disabilities and their families, but you had to often fight for them,” Gamradt says.
CASC in the present
CASC and CDP have continued to evolve through the years to keep up with the needs of the community, and so has the availability of AAC devices. Their team of SLPs has grown and they have also added occupational therapists, both having vital roles in the selection, acquisition, and learning of the best AAC device for each individual.
When helping the individual choose a device, an SLP looks at what the individual wants and needs to communicate, their communication partners, their current language skills, and what they typically do throughout the day.
The role of an OT is complementary to this. “When it comes to communication, I think that’s the gateway to all your occupations. You have to be able to interact with your peers and caregivers to make your needs and wants known,” says Theresa Cassel, MOTR/L, ATP, occupational therapist at CASC.
Cassel’s role is to figure out how patients can physically access the device. Whether that be through use of a switch, specific positioning or setup, or high contrast. “My main focus is, what is the person able to do consistently, and not become super fatigued while doing it,” Cassel says. That is because the aim is for the person to be able to use their device across a variety of settings. In order for that to happen, the individual and their communication partners need to be considered holistically.
The current team at CASC is composed of occupational therapist Cassel and speech and language pathologists Seale, Abygail Marx, MS, CCC-SLP, Kayla Kristensen, MS, CCC-SLP, Lauren Hammer, MS, Anne Hinker, MS, CCC-SLP, and Bethany Prevost, MS, CCC-SLP, and Camryn Bockelmann, SLP, CFY.
What this process looked like for Baba
Awa and Baba moved to Madison from Côte d’Ivoire, West Africa, when Baba was four. Awa already suspected that Baba had cerebral palsy, and later confirmed it with a diagnosis from UW Neurology, which connected them to the Cerebral Palsy Clinic at Waisman.
“It was very apparent that Baba needed a method of communication,” Awa says, so they were referred to CASC. Baba, who is now 12, uses sounds to communicate, and came up with his own form of sign language, which only Awa partially understands. However, sometimes he uses the same sound for multiple things, and she has to try to figure out what he needs.
Upon evaluation, he received a device called Nova Chat, which can be adapted to his growing vocabulary. He also received support for school and summer camp, “and they also made themselves available for me,” Awa says. CDP also continues to provide support directly to the family and school staff.
Types of tools and devices
There are numerous options for devices that can be adapted to each person’s needs. “Even when someone doesn’t have traditional motor skills, vision or sensory skills to be able to do what we think of as that traditional touching of a device, they’re still a great candidate for AAC because of all these other alternative access strategies that are available to help them make sure that they have the ability to communicate,” says Marx, who is also the clinic coordinator for CASC.
Michael O’Connor uses the Accent 1400, a tablet he controls with his chin using a joystick. He acquired his first AAC device around the time he was completing his bachelors in therapeutic recreation at Southern Illinois University. “The last year of college I went back to my DVR counselor and convinced them that I needed a new AAC that could be connected to a computer. I also asked for a computer, which I received, and I was the first non-computer science student to get a computer, so it was a big deal at the time. I needed a better way of getting my thoughts and ideas down on paper,” Michael says.
Michael, who is 64 years young, mainly relies on his speech as a form of communication, but in certain situations, and for certain people, his speech can be difficult to understand. He recalls, with laughter, a time in third grade when his teacher sent him to the principal’s office because she couldn’t understand his speech and falsely accused him of swearing.
His first device, he recalls, looked like a regular old black and white TV and a black box printer. Eventually, he was able to upgrade to a device, the Express III, that was more flexible, better for communicating, and could be attached to his wheelchair. “The only problem with the Express III was, I had no idea how to program or set up the device,” Michael says. He had heard about CASC before, so when he moved to Madison for an internship in 1984, he contacted them for help setting it up.
He worked with Gamradt at CASC for 30 years on and off, and currently works with Marx and comes back to CASC whenever he has issues with his device or needs a new one. “I am still looking for the perfect device,” he says.
The impact of AAC
Michael has had careers in the fields of therapeutic recreation and independent living services. He has led recreational sports programs for students, faculty, and staff with disabilities, was an assistant supervisor of programs for people with disabilities for Madison School and Community Recreation, and an advocacy specialist at Access to Independence, which was his dream job. “I was able to use my devices at work giving presentations to consumers, staff, and the community,” Michael says.
Michael had two bouts of aspiration pneumonia that significantly impacted his independence and speech. With his latest AAC device, he has been able to better communicate with his friends, family and caregivers, keep track of his finances, and have access to music and other entertainment.
Like Michael, having a communication device has helped Baba feel more empowered to speak up for himself. “He told me that he has a bully at the playground. I would have never found out that he was being bullied,” Awa says. “But he was able to tell me ‘someone who’s pushing and hitting me and I don’t like it’.”
Awa’s hope is for Baba to be able to continue to advocate for himself. “I want him to be able to tell when things are not going the way he hoped and for him to have effective communication with people that he doesn’t even know,” Awa says. She also hopes that with this device he will be able to demonstrate and communicate how much he knows at school, and be entrusted to learn at the level he should be.
The involvement of parents, like Awa, and parental education in the process of choosing and implementing a device is vital for its success. Parents are included in all therapy sessions; they set up the device, and learn how to use it and add new vocabulary to it. If the families aren’t accepting or seeing the device as a useful tool, the SLPs say, the device will not get used. “But starting off small, meeting the family where they’re at, and trying to build that relationship and have that open communication so that they feel comfortable asking questions and asking for help and running ideas past you, I feel like CASC really prides itself on making sure that we have that in place so that we can increase the effectiveness of the device that we get for the child,” Hammer says.
“The team there is phenomenal, because I know they have like 100 families that they work with, but they make it so personable where you almost feel like you’re the only family they’ve been working with,” Awa says. She and Baba visit CASC once or twice a year.
Sharing the knowledge through ECHO
In addition to educating the families, Project ECHO AAC (Extension for Community Healthcare Outcome) is a program that offers virtual trainings and opportunities to connect individuals who use AAC, family members, SLPs, teachers, OTs, social workers, and other team members to a knowledge sharing network where everyone can learn from each other. It helps build the capacity of individuals around the state to provide evidence-based services.
ECHO AAC helps create a support network, particularly for those coming from rural areas who have local teams who need guidance. For example, many SLPs are generalists, “and so what ECHO AAC has strived to do is to train generalists to be able to offer the care that we provide here in Madison,” says Sarah Marshall, MA, CCC-SLP, a former SLP at CASC. “Waisman is a specialty center and people travel from all over the state and surrounding states for care here. But we know that isn’t an option for everybody. And especially in the area of AAC,” Marshall says.
Since its launch in 2018, ECHO AAC has partnered with more than 350 clinics or specialists.
New projects and directions
Seale and the CASC team are working to find new avenues to reach and support more individuals in need with AAC, as well as developing new, evidence-based methods of doing so. They are interested in expanding beyond clinical practice, and implementing clinical research to create an evidence base for the work they do.
“Communication is a human right,” Seale says. “And the field that we’ve chosen to specialize in is very much trying to ensure that that human right exists for all individuals, regardless of communication abilities, style, or mode.”
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