Q&A: Customizing communication for children with visual impairment

MIDDLETOWN, Pa. - A Penn State alumna turned faculty member is working to help improve communication solutions for children with a brain-based visual impairment.

Tara McCarty, assistant professor of communication sciences and disorders at Penn State Harrisburg, graduated with her doctorate in communication sciences and disorders from Penn State in 2023. She joined Penn State Harrisburg that same year, teaching introductory courses in augmentative and alternative communication (AAC) - systems that assist individuals to communicate - and researching how to improve such systems. For example, an individual might use an iPad app to speak, pressing buttons or using their eyes to control the tablet. It may help some, but it's not a solution for all types of needs.

McCarty's research is focused on communication solutions for children who have cortical visual impairment - a diagnosis often made in children who have multiple disabilities and for whom traditional alternative communication systems don't always work.

In the Q&A below, McCarty discussed her work.

Q: What is cortical visual impairment?

McCarty: Cortical visual impairment (CVI) is a brain-based visual impairment. It results from damage to the visual pathways and the visual processing center of your brain. And it creates visual differences, very different from if you have just an ocular visual impairment, which involves your eye. This is actually how you process visual information.

Kids with CVI have difficulty seeing things that are complex. For example, a storybook picture that has a lot of background detail - all that background detail makes it hard for them to notice the large dog on the page. If they were looking at a desk and the desk is cluttered, they might not be able to find a pencil on it. I came to find out that it is the most common pediatric cause of visual impairment because it is so closely tied in with birth-related events. A lot of kids who have cerebral palsy have it.

Q: How did you become interested this subject?

McCarty: Eight years ago, I was working as an elementary school speech-language pathologist, and I had these kids with multiple disabilities on my caseload. I was supposed to help them talk. And I thought, "How do I help them talk? They are completely trapped in their bodies."

Kids with CVI are drawn to light and movement. I noticed a lot of them were doing interesting things with their eyes, like looking at the light or staring at a fan - just not typical vision. I started to learn more about a lot of children who have cerebral palsy or who had any type of traumatic event around the time of birth, they might have cortical visual impairment.

That caused me to go back for my doctorate and to focus solely on communicative solutions for kids who have motor impairments and CVI.

There's a ton of technology out there. There's all these AAC apps available. But none of them are uniquely situated for this type of visual impairment. So, speech-language pathologists will try to give children with CVI an iPad to communicate, but the children can't see the symbols. There's too much on the screen.

Q: How are you working to help children with CVI?

McCarty: In 2023, some of my colleagues at University Park - Krista Wilkinson, distinguished professor of communication sciences and disorders, and Dawn Sowers, who now works at Florida State University - and I created an open-access framework, basically an assessment tool, for speech-language pathologists to use to customize what AAC options would be best for a person who has this vision impairment.

The framework was created to provide guidance for developing AAC systems that are representative of the unique visual functioning of an individual with CVI. The tool encourages data-based adaptations to aided AAC, giving consideration to the individual's skills, their communication partner's responsibilities, and design choices for the AAC system.

One mother we knew, Lynn Elko, and her experiences of building an AAC system for her daughter, Emma, inspired the framework.

Now, I am leading a study to expand the use of the framework with four additional sites - two schools, where there are children with CVI, and two individual families. We meet with the school professionals or family members on Zoom and discuss the child's communication challenges. We walk them though the framework and help them to build an AAC system from the ground up for their child to communicate.

Q: How might an AAC device be different for a child with CVI?

McCarty: Many AAC systems contain preprogrammed visual displays with vocabulary symbols organized by either topic, part of speech, category or the alphabet. Most systems can display many symbols on the screen at once, sometimes more than 100 words. For a child with CVI, typical AAC systems are too visually complex. They might need to start out with only two to six symbols on the screen. They might need actual photographs of the objects or words. They might require the iPad to be positioned in a certain location visually or distance from their bodies. All these tweaks and decisions are guided by the framework.

Q: What's next following the completion of your current study?

McCarty: Our research team plans to investigate how existing technology could be used to gather eye detection and visual engagement data about where children are looking on their AAC displays. This data could help us to improve options for AAC system customization for individuals with CVI.

We are also continuing to work with schools and families to implement the framework and study the impact of individualized AAC systems on functional communication outcomes. We want to know: "If we make this system specific to the child's visual needs, does it improve their interaction and participation in their world?"