Love Doesn't Pay The Bills: Highlighting the Value of Family Caregiving

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. A...

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 whil...

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, watch...

This episode was originally published on June 20, 2023 We'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...

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.sp...

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 St...

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 sha...

"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 Folbre What economic picture do we get when we ask questi...

Welcome back to the relaunch of Love Doesn't Pay the Bills: Highlighting the Value of Care Work!  Guest Laura Mauldin is the author of " In Sickness and In Health ", about America's failure to properly support citizens who are chronically ill or disabled, instead relying on the unpaid labor of spouses. Laura interviews care recipient and caregiver dyads who are romantic partners. Laura shares some...

Informal or natural supports are care that is provided as part of a relationship, unpaid and outside of particular organizations or structures. It's what we build relationships from and a deep part of being  human.  Formal supports are the paid caregivers who do specific tasks at specific times as part of a paid job within some kind of organization. For example: A parent providing care for their o...

Financial impact can be one of the most difficult aspects of being a family caregiver.  Suzanne Ricklin joins us to discuss the particular impact of caregiving on Women investors, and encourages each of us to start small because saving even a little bit can make an impact on our future financial situation.  She talks about hiring a financial advisor and why women have particular advising needs.  ...

Jay Chaudry and Lisa get philosophical about care.  We acknowledge the multi-faceted nature of care as a main feature of the human experience.   Beyond narratives that place care firmly on one side or the other of various binary descriptions, care is woven in many ways throughout our lives.  What does this have to do with public policy?  How might we change our advocacy if we view care as an impor...

We've talked a lot recently about possible cuts to Medicaid.  One possible way de facto cuts could be implemented is work requirements.  Mary-Beth Malcarney joins us to talk all about how such requirements would impact people who currently use Medicaid, family caregivers, and in fact, everyone in the US, including those using private insurance.  Caregivers will understand that sometimes, while we...

There are threats to Medicaid among many other services, and today we talk about how to help preserve access to public services for disability related support needs that help both caregivers and people with disabilities.   There are various approaches each individual can take to make an impact on public services.  If we each do what we can, where we are with the resources we have, people with disa...

What is the care provided by family caregivers financially worth?  We discuss the value of unpaid care in America, how this value is beginning to be recognized or properly supported and what listeners can do to help make sure it is.   "Susan C. Reinhard is the chief strategist emeritus for the Center to Champion Nursing in America, a national resource center created to ensure that America has the...

With recent threats to Medicaid funding, we discuss why Medicaid is important to care in the United States, what it is and what cutting funds might mean. “More than 72 million people have health insurance through Medicaid – that’s more than one in five Americans. It covers children, senior citizens, people with disabilities, parents and adults without dependents.  In addition, more than 7.2 millio...

Mike George helps families rewrite their caregiving story – from one of sacrifice and exhaustion to one of joy, strength and resilience. A family caregiver himself for 3 decades, Mike intimately understands the burdens of supporting the primary care of a loved one. But he also knows the tremendous fulfillment it can bring. This lived experience led him to create The Soaring Families WayTM, a prove...

Dr. Merle Griff is the author of  the author of "Solace in the Storm: Caring for Loved Ones of Every Generation" as well as the owner of SarahCare Senior Solutions . She has lived experience caring for two family members: her mother and her husband. Lisa talks with Dr. Griff about ways to maintain healthy communication in relationships as family caregivers, particularly listening to the care recip...

The Chief Executive Officer and President of the National Alliance for Direct Support Professionals (NADSP), Joe Macbeth joins us to talk about the labor pool for these employees. Joe's experience in the field of intellectual and developmental disabilities(IDD) goes back 42 years - beginning as a direct support professional(DSP). Macbeth is recognized as an international leader when it comes to ad...

Calli Ross returns to the show to discuss a bill currently making it's way through the Oregon state legislature.  Named for her son, Tensy's law will make good on the legislative intent behind OR SB91 passed in 2023.  SB91 created a waiver for children with very high disability related support needs to pay their parents as direct support professional (DSP) providers under Medicaid Home and Communi...

Susanne cared for her mother and her father simultaneously.  Out of that experience grew Susanne's service to other family caregivers:  Caregiverwarrior.com and the book Self Care for Caregivers.  She shares wisdom from her intense caregiving. She writes that self care is "N ot All Bubble Baths and Yoga Pants" and at LDPTB we agree!  Nontheless, treating oneself with kindness matters in the most h...

Our guest today is Becky Curran Kekula.  Becky is a disability inclusion advocade.  She is a speaker and movie industry equity and inclusion expert.  Her experiences of both achrondoplasia, which is a form of drawfism, and medical motherhood give Becky a unique persepective on care.   http://www.beckymotivates.com/About-Us.html Become a supporter of this podcast: https://www.spreaker.com/podcast/l...

This episode was originally published on March 7, 2023.  The Guest this week is Calli Ross who is a family caregiver and leader in the movement in Oregon to allow parents to be paid for providing extraordinary care to their minor children with disabilities.   In the 2025 legislative session, Tensy's law, named for her son will be introduced to eliminate the lottery system that was created with SB9...

Lynn Abaté-Johnson  joins Lisa to discuss the breadth and complexity of our human feelings as caregivers, particularly at the holidays.  We reflect on the paradox that embracing difficult emotions can bring more ability to adjust to them, live with them, and notice the more pleasant ones which can exist right alongside them. After being a primary caregiver for her mom for over six years, Internati...

Jessica Patay is the founder and executive director of We Are Brave Together which brings together and uplifts over three thousand parents of children with disabilities.  When her son was diagnosed with Prader-Willi syndrome, she met a warm community of famlies whose child also experienced the condition.  We Are Brave Together creates a similar experience for many more moms whose children experien...