We talk with Jenny Price about home and community based services for people with disabilities. We touch on the history of people with disabilities, what it took to gain the current levels of public support for care in the community as well as why so many people in the disability community are concerned about loosing such supports. We talk about why it is important for people to receive services in their choice of settings.Jenny is the Executive Director for the Wisconsin Board for People with Developmental Disabilities. Prior to this, she was an award winning journalist reporting for the Associated Press. Read the full article "Community care enriches lives for the disabled, but advocates say feds are pulling back support" by Erik Gunn. Watch the documentary Where's Molly which is mentioned in the episode.If the above links aren't working, copy/paste these URLs:https://wi-bpdd.org/index.php/2026/05/14/wi-bpdd-welcomes-jenny-price-as-new-executive-director/https://www.yahoo.com/news/us/articles/community-care-enriches-lives-disabled-084509649.htmlhttps://www.youtube.com/watch?v=RwRUyA2OpbUBecome a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills-highlighting-the-value-of-family-caregiving--5692861/support.Follow us on Facebook or Bluesky. Subscribe to Lisa's newsletter on Substack.

Mary-Beth Malcarney returns to update us on the impact of H.R. 1, the so called "big beautiful bill" on Medicaid and those who depend on it. We talk about the variety of responses from different states to this legislation and what may still be coming as the bill takes full effect. Read about the impact of H.R. 1 on Medicaid: https://familiesusa.org/resources/the-big-budget-bill-one-year-later-millions-lose-coverage-millions-more-remain-at-risk/Mary-Beth is a senior advisor on Medicaid Policy for Families USA. She previously worked at the National Academies of Medicine, advising the Social Security Administration on updating disability policies as they related to the health of transgender people.Want to let CMS(Centers for Medicaid and Medicare Services) know how work requirements impact you? See the FamiliesUSA work requirements guide: https://familiesusa.org/wp-content/uploads/2026/07/Families-USA-Medicaid-Work-Reporting-Requirements-IFR-Comment-Guide.pdfBecome a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills-highlighting-the-value-of-family-caregiving--5692861/support.Follow us on Facebook or Bluesky. Subscribe to Lisa's newsletter on Substack.

Lenore Eklund is the Illustrator of "Where is the manual for this!?" and mom to a medically complex child. We talk about the planning and work that goes into kids with disabilities having ordinary(and extraordinarily beautiful) childhood experiences. We talk about what happens when communities around the family take some of that planning off the primary caregiver's shoulders and when they don't. And why it's all worth it! Read Lenore's substackGet Lenore's book Release: A NICU FairytaleFollow Medical Motherhood, also featuring "Where is the manual for this!?" with excellent reporting about raising and advocating for children with extraordinary care needs. Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills-highlighting-the-value-of-family-caregiving--5692861/support.Follow us on Facebook or Bluesky. Subscribe to Lisa's newsletter on Substack.

Direct Service Providers (DSPs) both paid family members, and nonfamily are critical to the wellbeing, autonomy and safety of people with disabilities. DSPs provide support with bathing, dressing, eating, transportation and more. Medicaid's home and community based services(HCBS) is specifically designed to ensure that people with high disability related care needs remain in their communities while being safe and thriving. Recent federal government actions, with the specified goal of eliminating fraud have raised questions about the entirety of HCBS and paying family caregivers. The three guests appearing today wrote an article about this entitled "The caregivers you've never heard of are in crisis"We discuss the importance and value of HCBS, the power of caregiver voices, why HCBS is too important to cut and actually saves a lot of money in addition to it's very real impact on quality of life for care recipients. We emphasize the mportance of all of us coming together to protect and in fact, expand, improve and enhance HCBS. We all agree that it's important to stop fraud, however it is also extremely important to provide necessary services for disabled people.Quoted in the episode is an article published by KFF, written by Elizabeth Hinton, Jessica Mathers, and Robin Rudowitz. They say “There are no reliable measures of fraud against Medicaid…Recent analysis of the FY 2023 HCFAC report found no beneficiary fraud in the listing. Providers convicted (of different kinds of fraud against Medicaid and Medicare) included ambulance service providers, durable medical equipment suppliers, diagnostic labs, nursing homes, pain clinics, pharmacies, physical therapists, physicians, and substance use treatment providers… Medicaid Paid an Estimated 94.9% of Total Outlays Properly, and Improper Payments are Mostly Due to Insufficient Information...What is known about fraud in Medicaid is that it’s not unique to Medicaid (fraud also occurs in Medicare and private health insurance) and is mostly committed by providers. There are checks on fraud, waste, and abuse at both the federal and the state levels“Also mentioned are examples of family member advocacy that are really impactful. One is the families which advocated for Tensy's Law in Oregon, starting at about 13 minutes in this video. And another example was at some recent Medicaid legislative hearings in Ohio. Have some tissues handy before you watch these! Diane Wilush began her career in social work in 1977 at a state institution in Miami. She served as President and CEO of United Cerebral Palsy of Georgia and United Cerebral Palsy of South Carolina in the early 2000s. After retiring from her CEO roles in Georgia and South Carolina, Diane continues her work as the part-time Senior Director of Public Policy and Advocacy for UCP of Georgia. In addition, she stepped into the role of Interim President and CEO of UCP National in the fall of 2025, continuing her commitment to leadership and advocacy at the national level.Barbara...

Elizabeth Milligan Cordova is an educator, early childhood advocate, and parent. She currently works for TEACH Colorado, helping to expand and strengthen early childhood education pathways. Across all of her roles, she remains deeply committed to advancing equity in education at every level.A parent to two young children, ages four and one, Elizabeth spends much of her time playing Go Fish, watching ballet performances in her kitchen, and doing dishes and laundry. Her youngest baby, Madeline, was born prematurely at 33 weeks and has benefited from Colorado’s early intervention services. Elizabeth loves yoga, running, travel, and reading, and treasures living close to her parents, sister, and brother-in-law.Elizabeth wrote this opinion piece about paid leave: https://www.usatoday.com/story/opinion/voices/2026/05/21/paid-leave-employees-pregnancy-childbirth/90163849007/She and her daughter feature in the documentary LifelinesOn this episode of Love Doesn't Pay the Bills, Elizabeth shares in depth about her experience with her baby in the NICU, and the importance of Paid Leave for all employees. She expresses very clearly how much positive impact strong support including paid leave has during a difficult postpartum and caregiving experience.Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills-highlighting-the-value-of-family-caregiving--5692861/support.Follow us on Facebook or Bluesky. Subscribe to Lisa's newsletter on Substack.

This episode was originally published on June 20, 2023We're joined by Emily Kenway, the author of "Who Cares: The Hidden Crisis of Caregiving, and How We Solve It". "Who cares" is a very loving memoir of Emily's own caregiving experience. It also is a great work of advocacy by imagining the changes that would happen throughout our world if we started from the default assumption that all people will be caregivers at some time in their lives.https://www.emilykenway.com/aboutBecome a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills-highlighting-the-value-of-family-caregiving--5692861/support.Follow us on Facebook or Bluesky. Subscribe to Lisa's newsletter on Substack.

Kat McGowan is a journalist whose life was changed by family caregiving. She was a 2024-25 Rosalynn Carter Mental Health Journalism Fellow, and developed a series for NPR about caregiving and mental health. We discuss common themes Kat noticed in her interviews as well as advice to someone ready to tell their own care story in a meaningful way. Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills-highlighting-the-value-of-family-caregiving--5692861/support.Follow us on Facebook or Bluesky. Subscribe to Lisa's newsletter on Substack.

Christine Villabona-Kuntz joins us to discuss her article in USA Today "I'm one of 48 million unpaid caregivers. Health care collapses without us". Christine is a nurse, and her perspecitve on care changed when she also became the family caregiver to her own mother. We discuss the crisis facing family caregivers and people in need of care. There are 43 million family caregivers in the United States: a labor force holding together our healthcare system. What do we have in common? Many of us are exhausted, and in need of real supports that allow us to continue this work feasibly. Christine urges legislative advocacy whenever possible.Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills-highlighting-the-value-of-family-caregiving--5692861/support.Follow us on Facebook or Bluesky. Subscribe to Lisa's newsletter on Substack.

Rita B. Choula, MA is the senior director of caregiving at the AARP Public Policy Institute. In her role, she drives the development of family caregiving initiatives by providing content expertise, both within AARP and in partnership with a range of external collaborators. Her work bridges policy and research to practice, centered on identifying and supporting needs of family caregivers.Rita shares information from AARP's Valuing the Invaluable report: American family members provide 49.5 billion hours of care with an economic value of $1 trillion.  Family care tasks include technical nursing tasks which in a paid setting would be highly paid. Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills-highlighting-the-value-of-family-caregiving--5692861/support.Follow us on Facebook or Bluesky. Subscribe to Lisa's newsletter on Substack.

"Conventional measures of economic success don’t capture the experience of everyday life in the U.S. The stock market is booming, and Gross Domestic Product is trudging upward. But inflation remains endemic, and the cost of care services is going up even faster than the “cost of living” measured by the standard Consumer Price Index." -Nancy FolbreWhat economic picture do we get when we ask questions about how people use all of their time, rather than just tracking dollars earned and spent? Guest Nancy Folbre is Professor Emerita of Economics at UMass Amherst and the author of Making Care Work: Why Our Economy Should Put People First. We discuss the limitations of using GDP to define the health of our economy and how we get very different pictures when we consider time use rather than earmed money alone. Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills-highlighting-the-value-of-family-caregiving--5692861/support.Follow us on Facebook or Bluesky. Subscribe to Lisa's newsletter on Substack.