Family Support Stories exists to amplify the voices and stories of unpaid family caregivers, connect aging and disability networks, and bridge the gap between research, policy, and the lived experiences of families providing support. Check out more, including archived episodes, on fsrtc.ahs.uic.edu. This podcast is created with funding from the National Institute on Disability, Independent Living, and Rehabilitation Research (Grant #90RTGE0006). The content is solely the responsibility of the authors and does not necessarily represent the official views of NIDILRR, ACL, or HHS.
In this episode of Family Support Stories, we speak with Dr. Helen Rottier, author and Dr. Morton Ann Gernsbacher, about their joint chapter in Disability Alliances and Allies: Opportunities and Challenges. Helen is an autistic researcher at the Wiseman Center at the University of Wisconsin-Madison, and Morton is a professor at the University of Wisconsin-Madison.
Their chapter, titled “Autistic Adult And Non-autistic Parent Advoca...
We speak with Dr. Laura Mauldin, author and professor at the University of Connecticut, about her new book In Sickness and In Health. Blending memoir with the stories of caregivers across the country, Dr. Mauldin reflects on how ableism, cultural expectations about love, and gaps in America’s social safety net shape the realities of caregiving. Together, they explore the concept of “The One,” (which refers to the person who carrie...
In this episode of Family Support Stories, we explore the realities of family caregiving in rural communities, where distance, limited services, workforce shortages, and gaps in data create unique challenges for families. Lillie Greiman of the Rural Institute at the University of Montana shares research insights on rural disability prevalence, unpaid caregiving, and the policy implications of incomplete data. The conversation highl...
In this episode of Family Support Stories, we talk with Dr. Sandy Magaña and promotora Lilia about the Poder Familiar program, a culturally grounded initiative supporting Latino families raising children with intellectual and developmental disabilities. They share how promotoras build trust, foster resilience, and create community connections that empower families with both practical tools and emotional support. Tune in to hear how...
This episode explores the real-life impact of respite care for
family caregivers, from the research to the lived experience. Dr. Rebecca Utz, a sociologist at the University of Utah, discusses her work developing the “Time for Living and Caring” (TLC) app, a research-based tool that helps caregivers plan, schedule, and reflect on their respite time. Her findings show that when caregivers intentionally set goals for how to use their ...
Guests Toni Gingerelli (National Alliance for Caregiving) and Amy Robins (PHI) discusses the Together in Care™ Initiative. The initiative aims to improve care outcomes by enhancing the partnership between family caregivers and direct care workers. The discussion highlights the importance of stable care partnerships, the role of care teams, and the potential of self-directed care models. Sharon Costabile then discusses her journey a...
Show Notes Available at fsrtc.ahs.uic.edu/resources/
This episode discusses the challenges faced by unpaid family caregivers, particularly those supporting individuals with intellectual and developmental disabilities (IDD). Yolanda, the mother of a 40-year-old daughter with IDD, shares her experiences providing full-time care while dealing with her own aging and health issues. Joe Caldwell, a researcher, highlights the critical role...
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