Family Caregivers are in Crisis: AARP and lawmakers call for relief

FOR IMMEDIATE RELEASE:                
April 10, 2024

CONTACT:
Monika Wnuk, Associate State Director, Communications
(773) 742-3743 mwnuk@aarp.org

Family Caregivers are in Crisis: AARP and lawmakers call for relief

New research shows Illinois’ Family Caregivers Need Help Navigating Caregiving Challenges

Springfield – The state’s 1.3 million family caregivers are in crisis, spending time and money they don’t have to take care of their loved ones, while feeling lost and overwhelmed trying to find reliable resources and information, state lawmakers and AARP Illinois said at a press conference Wednesday.

To address the desperate situation, confirmed by new research from AARP Illinois, Senator Celina Villanueva (D-12), House Assistant Majority Leader Camille Lilly (D-78), Representative Anna Moeller (D-43), AARP Illinois State Director Philippe Largent and caregivers urged support for a bill that would create a central hub of information on caregiving, long-term and at-home care services for individuals over 50.

“Every day, caregivers find themselves thrown into a crisis, having just a few days to make the rushed and impossibly difficult decision of whether their hospitalized loved one is going to receive care at home or go to a facility. They receive a short list of resources and telephone numbers and from there, they’re on their own,” said Philippe Largent, State Director for AARP Illinois. “It shouldn’t be so hard for Illinois residents trying to take care of their loved ones, and state leaders and advocates have the ability to create a tool that will help.”

HB 4677 calls for the creation of an Illinois Caregiving Portal, a one-stop-shop for caregivers providing easy access to a broad spectrum of resources including state, federal, non-profit and professional caregiving information. The portal would:

• Be a centralized, virtual portal for caregivers and all Illinois residents to access information on nursing home care, home and community-based services, veteran resources and federal information.
• Equip caregivers with a user-friendly tool for navigating caregiving services, care resources and local/state- and federal programming in collaboration with Area Agency on Aging and 2-1-1 call center.
• Be managed by the IL Department on Aging in a pilot program coordinating with aging, disability and veteran state agencies.

The concept of the Caregiving Portal was inspired by the stories shared in a year-long research project called “Pathways to Care” and conducted by AARP Illinois, a non-profit, non-partisan organization with 1.7 million members across the state. AARP Illinois commissioned the study in order to provide a comprehensive picture of the caregiver experience across the state.

“Pathways to Care” confirmed Illinois caregivers provide $21 billion dollars worth of care and pay an average of $7,500 out-of-pocket for their loved one’s daily needs such as food, transportation and adult day care.

The study also collected video interviews of older adult caregivers, who shared heartbreaking stories of the stress and uncertainty Illinois’ family givers feel as they struggle to find the best services and resources for their loved ones. View the report and videos here: www.aarp.org/ILcares or scan the QR code at the top of the release.

"I've witnessed firsthand the incredible challenges faced by family caregivers in our community," said Senator Celina Villanueva (D-12). "The Caregiver Portal is more than just a legislative initiative; it's hope and support for those who give so much of themselves every day. By providing easy access to resources and information, we're ensuring caregivers have the support to continue their invaluable work."

“Being both a lawmaker and a family caregiver, I can't emphasize enough the importance of legislation establishing a caregiver portal,” said Assistant Majority Leader Lilly (D-78). " "When you're juggling caregiving, work, your own family, and your health, having a centralized resource for support is indispensable. The Caregiver Portal not only recognizes caregivers' dedication but also equips them with the necessary tools to thrive."

"The Illinois Caregiver Portal will become a trusted companion for family caregivers, lightening their load and ensuring they can access vital resources and information with ease," stated State Rep. Moeller (D-43), reflecting on the portal's impact. "The Portal embodies our state’s unwavering dedication to supporting family caregivers throughout their journey.”

“Knowing there's a community and a wealth of resources out there, specifically tailored for people like me, would have lifted some of that weight off my shoulders,” said Rick Planos, a family caregiver and AARP IL member. “It would have been more than just helpful; it would have been a lifeline.”

AARP volunteers will spend the next several weeks walking the halls of the Capitol to tell their caregiving stories to legislators and urging them to support HB 4677.

“AARP Illinois is proud to champion the Illinois Caregiver Portal on behalf of family caregivers across the state,” Largent said. “And we thank the legislative sponsors of the measure, Senator Villanueva, Leader Lilly, and Representative Moeller for recognizing the struggles of family caregivers and working to bring them the support they so desperately need.”

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About AARP

AARP is the nation’s largest nonprofit, nonpartisan organization dedicated to empowering people 50 and older to choose how they live as they age. With a nationwide presence and nearly 38 million members, AARP strengthens communities and advocates for what matters most to families: health security, financial stability and personal fulfillment.