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Bridging the Gap: Enhancing Policies to Support Caregiving Youth

  1. Bridging the Gap: Enhancing Policies to Support Caregiving Youth Natalie Elliott Handy and JJ Elliott Hill 52:31

This week’s special policy panel, featuring experts Marvell Adams Jr. and Toni Gingerelli, discussed policy change and support for caregiving youth. They highlighted the significant gap between the estimated 5.4 million youth caregivers and the likely much larger actual number, emphasizing the need for better data collection through school-based assessments and self-reporting to understand this hidden population's challenges and experiences.

The discussion, featuring Marvell Adams Jr. and Toni Gingerelli, covered the impacts of youth caregiving, such as educational disruptions and mental health struggles. They emphasized the need for recognition, resources, and inclusive policies, praising the national strategy to support family caregivers while calling for more inclusivity of youth caregivers. The conversation highlighted the urgent need for equitable, innovative, and collaborative policy solutions to better serve caregiving youth.

About:

Marvell Adams Jr. is the CEO of Caregiver Action Network (CAN), dedicated to serving caregivers, marginalized communities, and older adults. Inspired by Alzheimer’s disease since high school, he holds a Bachelor’s in Political Science and a Master of Healthcare Administration specializing in Aging Services. CAN aims to improve the quality of life for millions of family caregivers supporting loved ones with chronic conditions, disabilities, or diseases.

Website: www.caregiveraction.org/
Facebook: @CaregiverActionNetwork
Instagram: @caregiveraction
Linked In: @caregiver-action-network
YouTube: @CaregiverAction
TikTok: @caregiveraction

Antoinette 'Toni' Gingerelli, Director of Policy and Advocacy for the National Alliance for Caregiving, translates research into policy for America's 53 million family caregivers. She oversees operations for Act on RAISE, Caregiver Nation Network, and the direct care workforce policy portfolio. Previously Chief of Staff for NJ State Senator Vin Gopal, Toni holds a Master of Public Policy from Harvard Kennedy School and is an advocate for gender equity.

Website: https://www.caregiving.org 
Facebook: https://www.facebook.com/NA4Caregiving/
Instagram: https://www.instagram.com/caregiver_nation/
LinkedIn: https://www.linkedin.com/company/national-alliance-for-caregiving/ Twitter: https://twitter.com/NA4Caregiving
YouTube:  https://www.youtube.com/c/TheNationalAllianceforCaregiving  

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Confessions of a Reluctant Caregiver

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JJ Elliott Hill Confessions of a Reluctant Caregiver

Known since childhood as “The Elliott Girls” or simply, “The Girls”, it makes sense that we work together to support our mother, and each other. Our trio begins with Jenefer Jane “JJ” who was and always will be “in charge”. She’s the peacekeeper. The responsible one, ensuring Natalie and Emilie remain alive. Next is Natalie, the middle child, who was and always will be Miss Congeniality. She’s the athlete. The rebel responsible for three babysitters exiting the summer of ’84. Then there is Emilie, the youngest, who was and always will be “the baby”. At 6’1”, she is the sensitive and quiet soul. The one responsible for the guinea pig that begged for lettuce and the stray dog we adopted from the bus stop.

After high school we went separate ways, from New Mexico to North Carolina. JJ would go on to get her Master’s in Business Administration and work in the finance world before partnering with her now husband, Dexter, to run a variety of businesses. Natalie would go on to get her Master’s in Social Work degree, and work in the mental health field, advocating for children and families to receive the most appropriate services. Natalie would marry and divorce early on but later marry Jason. Emilie would exit college early to marry and gift us with Owen and twins, Maxx and Natalie Jane aka “The Kids”. Emilie would later divorce and work with county government, focusing much time on caring for the kids.

The source of the sisterhood falls to Jim aka “Big Jim” and Connie, small town high school sweethearts married for almost 40 years.

In 2005, at the age of 52, mom would be diagnosed with Parkinson’s Disease. She hid the disease for years behind dad’s 6’2” frame. The tremors and sudden inability to move were both calmed and steadied by his arm and simple presence. He was her rock. Our rock. Close family and friends knew of her chronic illness, but to the rest of the world, everything was “fine”. Life would turn upside down when our dad unexpectedly passed in 2011 of a massive heart attack at the age of 58. The assumption was Dad would always be mom’s caregiver but that wasn’t God’s plan.

Mom would spend the years following our father’s death desperately seeking a cure for Parkinson’s while trying to manage her symptoms. As the years went by, the cruel symptoms associated with the disease increased, negatively impacting her body while her mind remained clear and in tune. We lived our lives checking in to make sure she was “okay” but knowing the day would come when we had to do more. And then it did. The summer of 2019 changed everything. That’s where the real caregiver story begins for us. Little did we know she would be only the beginning of our caregiving journey.

In March 2022, Natalie’s husband, Jason, was diagnosed with head and neck cancer. From the first time Jason detected something off about the swollen lymph nodes in his neck, to the formal diagnosis, and the decision to move to New York City to participate in a clinical trial at Memorial Sloan Kettering Cancer Center, the journey would push them to their limits. The silver lining of his diagnosis was the cancer brought them closer to God, restoring their faith in Him while also experiencing a myriad of blessings through the kindness of family, friends, and strangers. Their story is a testimony that will inspire and offer hope.

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