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For Hope Sparks, PhD, disability has never been just an academic subject — it has been part of her life for as long as she can remember.
A Florida native, Hope grew up alongside her older sister, who has Down syndrome. That experience shaped both her personal perspective and her professional interests, ultimately leading her to a career focused on disability research, policy, and advocacy.
“I always knew disability would be part of my professional world in some way,” Hope says.
After earning her bachelor's degree in psychology from New College of Florida and a master's degree in psychology from the University of North Florida, Hope continued her academic journey at the University of Illinois Chicago, where she completed a PhD in Disability Studies. In 2021, she moved to Chicago for graduate school — the first time she had lived outside of Florida.
“I had never been in Chicago, sparing a layover at O’Hare,” she says. “But now it’s my home. I really love the city.”
At UIC, Hope immersed herself in a range of research and community-based initiatives. She worked with the Early Intervention Family Clinic, helping connect children and families with evaluations and services related to autism and ADHD. She also helped manage the university’s Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program, an interdisciplinary training initiative that brought together future clinicians, advocates, researchers and self-advocates. She also worked on the Florida Strove to Thrive project, which seeks to understand and address the unique needs of aging family caregivers supporting individuals with intellectual and developmental disabilities.
Those experiences exposed her to disability policy issues and helped her identify the focus of her future research: guardianship and decision-making for people with intellectual and developmental disabilities (IDD).
Through her doctoral work, Hope explored how families and adults with IDD navigate guardianship decisions, a topic that is often discussed in the context of aging but less frequently examined from a disability perspective. Drawing on interviews and focus groups with both adults with IDD and aging caregivers, she found that families often face difficult decisions with limited information and support.
“What I found was basically that the systems are hard to navigate,” she says.
Her research revealed that while many families understood the purpose of guardianship, they often felt pressure to pursue it because alternative options were difficult to access or poorly understood. The decision was frequently driven by a desire to protect loved ones rather than a belief that guardianship was the ideal solution.
Today, Hope is continuing that work as a post-doctoral research fellow at Northwestern University Feinberg School of Medicine, where she works with a multidisciplinary mentorship team that includes Center for Rehabilitation Outcomes Research (CROR) scientist Anne Deutsch, PhD, RN. The fellowship, supported by an Advanced Rehabilitation Research Training grant from the National Institute on Disability, Independent Living, and Rehabilitation Research, provides training at the intersection of disability policy, health services research and advocacy.
“Hope brings unique perspectives to the fellowship experience, which led her to select a fellowship project that encompasses literature from multiple disciplines,” says Deutsch. “This will advance our knowledge in an under-studied and complex area of study – guardianship policy.”
For her project, Hope is conducting a broad scoping review examining guardianship policy across three fields: disability studies, health sciences and law. The project seeks to better understand how each discipline approaches guardianship and whether existing research aligns with principles of disability justice.
“There’s a lot of work to be done in guardianship,” she says.
The fellowship also serves as preparation for the next stage of her career. In her second year, Hope will participate in a Health and Aging Policy Fellowship that includes training in Washington, D.C., and a policy placement with a congressional office or disability-focused organization. The experience will allow her to translate research findings into real-world policy impact.
Throughout her academic career, Hope has been driven by a desire to bridge scholarship and lived experience. By combining rigorous research with a deep understanding of the challenges facing people with disabilities and their families, she hopes to help create systems that are more accessible, equitable, and responsive.
Now firmly settled in Chicago, Hope continues to build a career focused on improving disability policy while ensuring that the voices of people with disabilities and their families remain at the center of the conversation.