Family Support Stories

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 Advocates: Bridging the Divide”, explores the separation and merging of goals and discussions between autistic self-advocates and nonautistic parent advocates. This episode discusses what US national priorities can bridge previous divides, creating space for autistic adult and non-autistic parent advocates to work together in establishing policies and practices that improve life for autistic people and their families and communities.

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 carries the overwhelming weight of care), and examine how policy, culture, and community responses can either isolate caregivers or help redistribute the labor of care more collectively.

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/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.