When Shekalia Johnson’s mother was 13, her father suffered a massive stroke that left him severely disabled, forcing her to live with friends and family.
“She entered into this invisible foster care system,” Johnson said. “It changed the trajectory of her life.”
Her mother’s experience inspired Johnson to co-found the nonprofit Voices of Impact (VOI) to serve parents and guardians with chronic debilitating conditions.
Yet as Johnson’s nonprofit helped families with similar stories by taking children on recreational trips or delivering produce to disabled households, she found that this issue was largely unrecognized. There was little research about how debilitating conditions affected parenting or the ways that policymakers could help.
“There’s a lot of research around folks with disabilities, whether they’re children or adults,” Johnson said. “But how that affects the family as a whole? There’s not a lot of research around that.”
That has changed, thanks to three students from the USC Price School of Public Policy.
The Master of Public Administration students – Karen Avila, Jose Ayon, Mark Borges – researched how families that VOI serves are affected by healthcare disparities in California, and suggested strategies to help the nonprofit start to advocate for these families.
The graduates not only helped the nonprofit, they won the John Randolph and Dora Haynes Foundation Recognition Award for Outstanding Performance, the top honor for capstone projects from the USC Price School’s Master of Public Administration and Master of Nonprofit Leadership & Management programs.
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Find Out More“This organization is very small, about three people in total, who are trying to do this very critical work,” Borges said. “They really wanted to understand how they can best show up for the target population that they’re serving and advocate on their behalf from a policy perspective.”
The students identified several significant healthcare disparities, including substantially higher out-of-pocket healthcare costs for households with disabilities and a higher likelihood of delaying care, falling into medical debt or forgoing essential services due to cost. Their research also revealed specific challenges facing households in the Los Angeles County cities that VOI serves, such as a limited number of food distribution sites or nearby hospitals.
“It suggested that there are geographical challenges to accessing some of the things that these families need, so we need to tailor resource allocation to better reduce health disparities,” Avila said.
To push for policy reforms, the students recommended that VOI use storytelling about the experiences of low-income families with disabilities. The nonprofit should also build alliances with coalitions and experienced partners, the students said, leveraging shared resources, mentorship, and coordinated action to strengthen VOI’s policy presence and expand its influence.
“We all conducted interviews with state, county and local stakeholders that could provide tips and tricks on how to navigate the advocacy world,” Ayon said. “Storytelling was one of the common themes, that it was a popular form of advocacy here in Sacramento.”
The students’ report will inform VOI’s strategic planning for the next couple of years, Johnson said.
“Being able to get a clear report that captures both the urgency and the opportunity behind Voices of Impact’s mission, it was very affirming,” Johnson said. “We know that this work needs to be done, but with us being a small nonprofit organization, just having the data around it and the capacity that USC has to actually help us see this into actualization, was amazing.”
