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 highlights why rural caregivers are often overlooked in program planning and how state policies (such as paid family caregiving) can shape outcomes for families and communities. The episode also features Erin Rolando, a disabled and multiply neurodivergent parent living in a rural area, who offers a firsthand account of navigating education, healthcare, transportation, and caregiving with limited local supports. Together, these perspectives underscore the need for person-centered data, cross-system collaboration, and policies that truly reflect the lived experiences of rural caregiving families.

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/ShowNotes

A transcript and show notes are available at go.uic.edu/ShowNotes

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 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.