By Rachel Robey
Through cross-campus collaboration and NSF funding, Johnson explores avenues for improving the fit, function, and accessibility of technology among Wisconsin adults with Down syndrome.
“There’s a common misconception that adults with Down syndrome aren’t using technology, but they are,” says Hailey Johnson PhDx’26, a first-generation college student and fourth-year Computer Sciences (CS) doctoral student. “I want researchers to consider how we can increase the accessibility and learnability of technologies for people with cognitive disabilities.”
For Johnson, it’s personal: “My older brother has Down syndrome,” she says. “I’m very close with the community—I consider it my community.”
As part of the People & Robots Lab, and with support from the National Science Foundation’s (NSF) Graduate Research Fellowship, her research strives to improve the fit, functionality, and accessibility of supportive technologies for adults with Down syndrome.
“I was able to find my own path”
In addition to being fascinated by the research coming out of the People & Robots Lab, Johnson was drawn to the welcoming and collaborative atmosphere fostered by Director (and Sheldon B. Lubar Professor of Computer Sciences) Bilge Mutlu. “We have a very culturally diverse lab, and more than half of us are women,” she says. “It creates a really collegial working environment.”
While most PhD students jump into established research projects—for People & Robots researchers, that might look like remapping human motion to robot motion, developing social learning robots, or building telecare systems to assist elderly and homebound populations— Johnson had other ideas.
“Bilge is amazing,” says Johnson. “I pitched him an idea focused on accessibility. Even though his area is human-robot interaction, he was super open to [my idea] and took me on right away.” Relying on funding from her NSF fellowship, which provides three years of financial support including an annual stipend of $37,000, Johnson was able to carve out space in an understudied area.
One current project looks at privacy and security notifications, which Johnson says are often not designed for individuals with cognitive differences. She’s also starting a project exploring speech recognition for people with Down syndrome, many of whom have speech differences limiting their access to speech-based systems. Currently, she’s conducting a participatory design study exploring interaction modalities within educational budgeting tools between games, augmented reality, and tangible interfaces. Much of Johnson’s research promotes autonomy among adults with Down syndrome—a current interest is using artificial intelligence and large language models to “provide personalized instructions and feedback and build individualized and context-sensitive supports that promote autonomy.”
“I was able to find my own path,” says Johnson. “There’s actually very little research with adults with Down syndrome and technology, so that’s why a lot of my studies are exploratory.”
Supporting Wisconsin adults with Down syndrome
Through Mutlu, Johnson was introduced to Audra Sterling, a professor in the Department of Communication Sciences and Disorders (CSD) and an investigator at the Waisman Center, where researchers advance “knowledge of human development, developmental disabilities, and neurodegenerative diseases.” While primarily focused on children, the Waisman Center accepts patients with Down syndrome up to age 21, making it one of relatively few Down syndrome clinics in the US to accept adults as patients. Sterling’s research group, the Research in Developmental Disabilities and Language Lab (RIDDLL), studies cognitive and language development of children with fragile X syndrome, autism, and Down syndrome.
“Audra’s been great to work with, and everyone in her lab is amazing. They help me pilot my studies, and I attend their lab meetings,” says Johnson, who counts herself lucky to have this research center on UW–Madison’s campus. “When tech is your world, it’s easy to fall into this trap of assuming a technology is easy to use or learn. So it’s been beneficial to get advice from non-tech researchers who really understand Down syndrome.”
At first, Johnson was excited about the idea of building new educational assistive technologies and services catering specifically to adults with DS, but over the course of her research her perspective has shifted. “A lot of accessibility literature demonstrates that many people with disabilities actually might not want to use a tool that’s ‘only’ for them—it may make them feel othered,” she explains. “Now, I’m actually very interested in adapting pre-made technology to better fit adults with Down syndrome.”
According to Johnson, her research has also benefited from the proximity and partnership of local organizations like Gigi’s Playhouse, Best Buddies UW–Madison Chapter, and the Down Syndrome Association of Wisconsin.
“For the Down syndrome community, I hope that my work will help them either create and maintain social relationships or secure good occupational placement—there are a lot of low-paying, low-skill positions for this community, even though a lot of people could be doing more,” says Johnson. “In the long run, I hope my work opens up researchers’ eyes and shows them there are other communities we can serve.”