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Sofia Benson-Goldberg, a recent doctoral graduate of the Department of Allied Health Sciences’ Division of Speech and Hearing Sciences, received an Impact Award from The Graduate School earlier this year thanks to her work in improving readability for the CDC’s COVID-19 documents targeting adults with extremely low literacy skills, including those with intellectual and developmental disabilities.

Adjusting Priorities to Preserve the Health and Safety of Others

In the spring of 2020, Benson-Goldberg had finished data collection for her dissertation and planned to use the summer months to focus on analysis and writing, as she would defend her dissertation that fall. However, Georgia Technical Institute approached the Center for Literacy and Disability Studies in July 2020 for a subcontractor opportunity to simplify the text of CDC COVID-19 guidance.

Thanks to her previous experience completing systematic reviews and successfully integrating disparate bodies of literature, Benson-Goldberg was asked to lead the quick-turnaround review of the text to develop the Minimized Text Complexity Guidelines. She shifted her efforts to the new project as other in-person data collection projects were delayed due to the pandemic, and still successfully defended her dissertation as planned in the fall.

Constant Change Poses Challenges, but Results are Rewarding

The Centers for Disease Control and Prevention (CDC) is a trusted source for public health information. However, during the COVID-19 pandemic, the CDC’s guidance documents were too complex to be read and understood by the 21 percent of adults in North Carolina who read at or below basic reading levels, including approximately 70,000 adults with intellectual and developmental disabilities (IDD).

The project highlighted an immediate need for adults with intellectual and developmental disabilities, who are up to eight times more likely to die from contracting COVID-19 than adults without intellectual and developmental disabilities. Benson-Goldberg and her team faced various challenges and the pressure of quick turnaround time to reach and help those who needed it most.

The CDC revised COVID-19 guidelines frequently in 2020 due to changing understandings of the virus, which required Benson-Goldberg and her team to be flexible and responsive in their work. Additionally, the work had never been done before – it required creation of new guidelines and a system to apply the guidelines, all while balancing the need to reach a specific target audience while accurately communicating vital information about COVID-19.

“This work has been fulfilling because of its direct impact on improving outcomes for people with intellectual and developmental disabilities,” says Benson-Goldberg. “In late 2021, the simplified documents that were posted on the CDC website had been downloaded more than 650,000 times.”

In fall 2021, Benson-Goldberg conducted usability testing on some of the documents that resulted from this work in order to understand the extent to which adults with intellectual and developmental disabilities can read and understand the simplified guidance documents. Several publications are forthcoming to report the participants’ reading comprehension results and analyze how question type impacts assessment of reading comprehension.

“While my current projects do not use the Minimized Text Complexity Guidelines, I am eager to apply them to documents in the future,” says Benson-Goldberg. “I believe they have applications for improving supported decision-making and increasing accessibility of a variety of text-based communications. For these guidelines to be adopted, we must develop materials to support others in applying the guidelines consistently.”

Looking Ahead – Educating Others and Impacting Policy

Through her experiences working on this project, she has had the opportunity to collaborate with other institutions, build her professional network and learn how to communicate with government agencies.

Recently, recipients of the Impact Award were invited to present their work to members of the Board of Governors, congressional delegates, and NC Assembly members. The presentations and meetings demonstrated the important ways that graduate students impact the state of North Carolina through research and education, and served to expand the reach of the recipients’ work.

“This opportunity marks another way for me to improve my skills in disseminating research to a variety of stakeholders,” says Benson-Goldberg. “The Graduate School is committed to providing training to support award recipients in efficiently and effectively communicating to these policymakers, for which I am grateful.”

Benson-Goldberg’s professional goal is for her work to impact policy, and she plans to continue improving communication, literacy instruction and intervention for students with developmental disabilities and complex communication needs.