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 own child is informal support, and a teacher at a preschool provides formal support. Formal supports cannot replace family care, but they can wrap around the whole dyad or family to support the meaningful, loving care which happens informally. Donna Thomson is a co-author of a study on the interaction between formal supports and informal.

Donna Thomson is a caregiver, author and award-winning educator.  She is the mother of two grown children, one who has severe cerebral palsy and medical complexity. Donna also helped care for her mother who lived with dementia until she passed away in the summer of 2018 at the age of 96. Donna is the co-author (with Dr. Zachary White) of The Unexpected Journey of Caring: The Transformation of Loved One to Caregiver (Rowman & Littlefield, 2019) and author of The Four Walls of My Freedom: Lessons I’ve Learned From a Life of Caregiving (The House of Anansi Press, 2014). Donna is a co-founder and Co-Director of CanChild Family Engagement in Research Program and she facilitates the Caregiving Essentials Course, all at McMaster University. She currently sits on the advisory board of the Canadian Centre for Caregiving Excellence where she won the inaugural Vickie Cammack Trailblazer Award.

Read more about the study on Donna's Blog

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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.  

Suzanne Ricklin serves as vice president, Retention & Sales for Nationwide’sRetirement Solutions Distribution team. She is responsible for the retention andgrowth of our existing government and corporate retirement clients incorporatinga strategic account management approach across all plan types. She also hasresponsibility for our Consultant Relations team that is focused on driving brandawareness of Nationwide’s unique value proposition in the marketplace.

The retention teams across corporate and government, the large custom planteam, the Retirement Resource Group and the Consultant Relations team reportto Suzanne. Her teams are responsible for increasing the expansion ofNationwide solutions in strategic alignment with client goals and objectives.The retention teams across corporate and government, the large custom planteam, the Retirement Resource Group and the Consultant Relations team reportto Suzanne. Her teams are responsible for increasing the expansion ofNationwide solutions in strategic alignment with client goals and objectives.

Read the full article "More than Two-Thirds of Women Investors' Careers Impacted by Caregiving Responsibilities" by Nationwide

Find Nationwide's additional resources for investing here

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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 important, key part of our humanity?

Read Jay's full article, "Beyond False Binaries in Care
New perspectives on the most fundamental of human activities" here: https://open.substack.com/pub/favorablethrivingconditions/p/beyond-false-binaries-in-care?r=mras5&utm_campaign=post&utm_medium=web&showWelcomeOnShare=false

Jay Chaudhary has the unique experience of simultaneously creating policy for and executing a successful state behavioral health strategy. During his five year tenure as Director of the Indiana Division of Mental Health and Addiction and Chair of the Indiana Behavioral Health Commission, Jay led a significant overhaul of Indiana’s behavioral health system, resulting in a significant jump in the state’s overall mental health rankings.
Jay has recently begun a new journey as Senior Fellow for Mental Health and Wellness at the Sagamore Institute, an Indianapolis, Indiana based research institution. Jay’s work at Sagamore focuses on continued advocacy for equitable behavioral health care access and exploration of strategies for improving overall community well-being.
Jay is an Aspen Institute Ascend Fellow and has received a number of accolades for his work, including being named a “20 Under 40” State Government Leader from the Council of State Governments and a ”Champion of Justice” by the Indiana Judges Association.


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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 may qualify for a formal program, doing the administrative legwork to receive it might be difficult to impossible.  How does one prove they are a family caregiver if that is an exception, anyway?

Read the full Families USA fact sheet on Medicaid work reporting requirements here:
https://familiesusa.org/resources/medicaid-work-reporting-requirements-bureaucratic-burdens-that-threaten-working-families-providers-and-local-economies/

The Families USA health action resource page is here, with lots of information about how to make your own Medicaid story known to your legislators: https://familiesusa.org/healthactionresources/

Mary-Beth Malcarney is the Senior Advisor on Medicaid Policy at Families USA.  She previously lead a project to advise the Social Security Administration on updating disability policies as they relate to the health of transgender and gender diverse people.  She also worked as an assistant research professor at at The George Washington University (GWU).






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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 disabilities will receive the formal public support they need.  

Casey Doherty is the policy analyst for the Disability Justice Initiative at American Progress. Prior to joining American Progress, Doherty served as a paralegal specialist at the Federal Trade Commission and as fellowship alumni liaison at Partners for Youth with Disabilities, where she facilitated a national fellowship program for young people with disabilities. Doherty holds bachelor’s degrees in government and American studies from Georgetown University and a master’s degree in disability studies from the City University of New York’s School of Professional Studies. She is a doctoral student studying special education and disability studies at the University of Nevada, Reno.

Casey's LinkedIn profile: https://www.linkedin.com/in/caseydoherty1/

The article Casey co-authored is here: https://www.americanprogress.org/article/how-the-disability-community-can-fight-back-in-2025/

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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 highly skilled nurses it needs to provide care
in the future. Previously, she was a senior vice president at AARP, directing
its Public Policy Institute (PPI), AARP’s focal point for public policy research
and analysis at the state, federal, and international levels. She also led
PPI’s Family Caregiving Initiatives."

The ABC article which quoted Reinhard is here:https://abcnews.go.com/US/invisible-crisis-americas-caregivers-600-billion-unpaid-cost/story?id=116129335#:~:text=%E2%80%9CThere%20are%2048%20million%20family,%2C%E2%80%9D%20Reinhard%20told%20ABC%20News.

More about Reinhard: https://campaignforaction.org/team-member/susan-c-reinhard/
or https://blog.aarp.org/author/susan-reinhard



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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 million children are enrolled in the Children’s Health Insurance Program, because their families’ incomes are too high to qualify for Medicaid.

• Medicaid provides health insurance for about two in five children and also covers about 40% of all births, according to KFF, a nonpartisan health policy research group. It also covers more than 60% of nursing home residents and nearly 30% of non-elderly adults with mental illness, as well as about one in three people with disabilities. Plus, it pays for substance abuse treatment.”-CNN

Nicole Jorwic is the Chief of Campaigns and Advocacy at Caring Across Generations.  She is a family caregiver, having a brother with significant disabilities, and watched her parents navigate care for her grandparents.  These experiences led Nicole to passionately advocate for a better experience for everyone.  She is not afraid to share her viewpoints and positions.  More information about Nicole and Caring Across Generations is here: https://caringacross.org/about/team/

Learn more about the difference between Medicaid and Medicare here: https://www.hhs.gov/answers/medicare-and-medicaid/what-is-the-difference-between-medicare-
medicaid/index.html

Read the full story quoted from CNN: https://www.cnn.com/2025/02/26/politics/medicaid-proposed-cuts-what-matters/index.html

Read about the popularity of Medicaid here: https://www.kff.org/health-costs/poll-finding/kff-health-tracking-poll-public-weighs-health-care-spending-and-other-priorities-for-incoming-administration/

Find out what Medicaid is called in your state: https://www.healthcare.gov/medicaid-chip-program-names/

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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 proven method that can be every family’s reliable companion on their journey to joy. He is a speaker, author, and co-founder of Soaring Families whose mission is to redefine caregiving for families.

Mike share's his story of care for his son, how he and his wife created a bigger team of caregivers around them and teach others to do so.

Find more about Soaring Families and The Pink Book here:  https://www.soaringfamilies.com/
Mike welcomes you to email him directly: mike@soaringfamilies.com

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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 recipient deeply. She also suggests micro doses of self care for exceptionally high acuity family caregivers. One such micro dose of self care might surprise you! (hint: Wives sometimes point out that many husbands do this to avoid domestic labor). Family caregivers will appreciate Dr. Merle's no nonsense approach to understanding and valuing our work.

Dr Griff's book can be found here: https://www.amazon.com/Solace-Storm-Caring-Loved-Generation/dp/B0C2TYQ2PK/ref=sr_1_2?crid=2YP4LMWT0EILB&keywords=solace+in+the+storm&qid=1685028259&sprefix=solace+in+the+storm,aps,96&sr=8-2

More information about SarahCare Senior Solutions can be found here: https://sarahcare.com/

The free task app and philosophy Lisa mentioned which make it easier to unhook mentally from all the planning of the stuff is Todoist and "Getting Things Done". Dr Griff's suggestion of a list for help wanted can also be easily maintained on this app with labels.  https://www.todoist.com/productivity-methods/getting-things-done

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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 advocacy to recognize direct support as a profession. His work contributes to solving workforce challenges that affect the intellectual and developmental disability service system.

https://nadsp.org/about-us/our-staff/

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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 Community Based Services.   However, SB91 also created a lengthy waitlist, with only about 10% of otherwise eligible children having access to parent paid caregiving.  Tensy's law will ensure that all eligible children can receive supports by paying their parents as caregivers.  

There will be a hearing about Tensy's law at the Oregon state capitol on Feb 4, 2025 which happens to be Tensy's birthday!

Find information about the Feb 4th 2025 hearing here: https://www.facebook.com/share/1Eqk88uixr/
follow Advocates for Disabiliy Supports here: https://www.facebook.com/ADSOregon

testimony for SB91, why parent paid caregiving is important(starting at about 1:20 into the video): https://olis.oregonlegislature.gov/liz/mediaplayer/?clientID=4879615486&eventID=2023021052

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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 "Not All Bubble Baths and Yoga Pants" and at LDPTB we agree!  Nontheless, treating oneself with kindness matters in the most high acuity care situations.  Instead of self-care let's talk about self-advocacy, self-awareness and extending kindness to ourselves as we do our loved ones.  

Check out Susanne's website!

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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



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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 SB91 which allows only about 10% of otherwise eliegible children to hire parent providers for pay.  Tensy's law will allow all otherwise eligible children to pay parent providers for extraordinary care needs, the same as they would be able to pay any other direct support professional.

https://www.facebook.com/groups/1750726871736838

https://www.facebook.com/ADSOregon

https://olis.oregonlegislature.gov/liz/mediaplayer/?clientID=4879615486&eventID=2023021052

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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, International Best-Selling Author & Speaker, Lynn Abaté-Johnson, understands the typhoon of emotions and responsibilities that come with caring for a loved one. Like most family caregivers, Lynn juggled caregiving duties with a full-time career. In her daily life, she’s a global community builder and business consultant. Lynn wrote the book, “Out Of Love: A Daughter’s Journey With Her Mom To The End” to normalize and de-stigmatize what many families may take for granted or miss in their roles as caregivers. She offers practical tools & resources, along with encouragement for other family caregivers, with the goal of bringing light to the dark and peace to the soul.

Get a free chapter of the book here!

Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.

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 experience a wide variety of disabilities.  You can join a free online or in person facilitated support group, receive newsletters and check out the Brave Together podcast!

We talk about loving our caree, all the myriad feelings that can come up during the holidays including cyclical grief, and how to gift a family caregiver.  



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When we move away from specifying the care recipient's disease to focus on the caregiver, we find that different ways of talking about care experiences are very useful and descriptive.  The Rosalynn Carter Institute for Caregivers together with Duke University created a system to describe various caregiver experiences called Caregiver Profiles:  Are you learning about a new diagnosis for your family member?  or maybe managing a static illness?  or managing a system or setting change with your loved one? This way, we can talk about our experiences and needs as caregivers without sharing the medical details of our loved ones, and find commonality with people who don't even have direct care experience.  For example: everyone has been through some kind of big change where they had to learn a lot at once.  

Dr. Jennifer Olsen joins us.  Dr Olsen is an experienced epidemiologist.  She serves as Chief Executive Officer of the Rosalynn Carter Institute for Caregivers (RCI), which promotes the health, strength, and resilience of the 53 million family caregivers throughout the United States. 

More information about the Caregiver Profiles is here.



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A heartfelt wish for your holiday season from Lisa.

May your coming month be full of moments that you genuinely enjoy! 

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This is a must listen episode!  Elissa Strauss brings to the podcast her deep contemplation of all aspects of caregiving. 

Elissa is the author of "When You Care", which is described as an “urgent and necessary book” by Rebecca Traister, New York Times bestselling author and we agree.  

How do we see care as the huge profound experience that it is?: Care is just as worthy of storytelling, respect, and material support as mountain climbing, and full of opportunitites to engage with the core questions around being human.  

Details about the book here: https://www.simonandschuster.com/books/When-You-Care/Elissa-Strauss/9781982169275

Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.

In this re-launch of the podcast, we talk data around caregiving.   Denise Brown is with us to talk about data, why it matters and her tool to help you view some of your own numbers.  Why do we need the numbers around care?  We have some compelling reasons.  

Explore your own caregiving stats
The Data Story of Caregiving event registration

Denise supports individuals managing difficult life experiences with coaching, planning and training. Through her work, Denise helps clients find hope, possibilities and a path forward. Denise began helping individuals who care for a family member in 1990 and launched a business to help them in 1995. She created one of the first online caregiving communities in 1996 which she managed until its sale in 2020.

Denise now develops and delivers training programs for the workplace and for individuals who want to coach family caregivers. More than 400 individuals from eight different countries have enrolled in her training programs offered through her company, The Caregiving Years Training Academy.

Denise began helping her parents in 2004 after her father’s bladder cancer diagnosis. Her mom, who had Parkinson’s disease, died in August 2022, one year to the date after Denise’s brother died. Her father died in July 2023.

You can connect with Denise via her community, CaringOurWay.com.

Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.