In this episode of Democracy Does: The Civic Power Playbook, host Robin Hamilton speaks with public health expert and caregiving advocate Prof. Maggie Ornstein about why caregiving must be recognized as essential work.

In recognition of National Caregivers Day, the conversation explores how Medicaid cuts and shifting policies are increasing pressure on both paid and unpaid caregivers. Prof. Ornstein explains that what is often labeled “caregiver burden” is less about the act of caring itself and more about the lack of financial, structural, and policy support surrounding it.

Drawing from her own experience becoming her mother’s caregiver at 17 after a catastrophic medical emergency, Prof. Ornstein shares what long-term caregiving looks like in practice. She discusses the financial strain, emotional toll, housing challenges, and systemic gaps families face—often for decades and often without compensation or recognition.

The episode examines threats to home care protections, the growing role of private equity in long-term care, and the importance of consumer-directed programs that allow family members to be paid for providing care.

We have resources are listed at the end of this podcast, and for those in New York State, you can check out this website here:  https://www.health.ny.gov/health_care/medicaid/program/longterm/cdpap/