Episodes

  • A Systemic Failure to Invest in the Care Workforce: With Guest Joe Macbeth

    A Systemic Failure to Invest in the Care Workforce: With Guest Joe Macbeth
    Feb 6 2025
    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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    38 mins
  • This Real Person Needs Real Supports: With Guest Calli Ross

    This Real Person Needs Real Supports: With Guest Calli Ross
    Jan 30 2025
    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

    Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.
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    32 mins
  • Grab a Little Kindness for Ourselves: With Guest Susanne White

    Grab a Little Kindness for Ourselves: With Guest Susanne White
    Jan 16 2025
    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!

    Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.
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    30 mins
  • Looking at Care From Both Sides Now: With Guest Becky Curran Kekula

    Looking at Care From Both Sides Now: With Guest Becky Curran Kekula
    Jan 9 2025
    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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    36 mins
  • Replay of Fully Fund Care: with guest Calli Ross

    Replay of Fully Fund Care: with guest Calli Ross
    Dec 26 2024
    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

    Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.
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    43 mins
  • These Are All Normal Feelings: With Guest Lynn Abaté-Johnson

    These Are All Normal Feelings: With Guest Lynn Abaté-Johnson
    Dec 19 2024
    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.
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    35 mins
  • Connections, the Holidays and Cyclical Grief: With Guest Jessica Patay

    Connections, the Holidays and Cyclical Grief: With Guest Jessica Patay
    Dec 12 2024
    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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    23 mins
  • Caregiver Profiles with Guest Dr Jennifer Olsen

    Caregiver Profiles with Guest Dr Jennifer Olsen
    Dec 5 2024
    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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    29 mins