Family Support Stories

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 Poder Familiar and interventions like it are reshaping outcomes for the whole family. Una transcripción en español de este episodio está disponible en go.uic.edu/ShowNotesA transcript and show notes are available at go.uic.edu/ShowNotes

This episode explores the real-life impact of respite care forfamily 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 time off, it can significantly reduce stress and enhance well-being. Later in the episode, we hear from Rocio Perez, a longtime family caregiver and Director of the Illinois Life Span Program at The Arc of Illinois. Rocio shares candid insights about how she first accessed respite care, the creative ways she’s made it work over the years, and why she never feels guilty for taking time for herself. Her story highlights the importance of accessible, culturally appropriate respite services and the role of community support in sustaining caregiving.

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 as a caregiver for her daughter Rachel, who has Down Syndrome, and the challenges and successes of building a care team. Sharon advocates for better support systems for families, and family caregivers having a “seat at the table” in policy decisions.

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 of family caregivers, noting there support needs for family caregivers is increasing due to an aging population and a direct care workforce crisis. Solutions discussed include expanding self-direction in care, improving respite care, and the RAISE Family Caregiver Council's national strategy to support caregivers.