Casey Holds Hearing on Caregiving Crisis, Introduces New Legislation to Begin Eliminating Home Care Services Waiting List

New bill would help hundreds of thousands more seniors and people with disabilities receive life-sustaining care services at home and in their communities

More than one in five Americans are family caregivers, many doing unpaid work

Washington, D.C. - On Thursday, March 9, U.S. Senate Special Committee on Aging Chairman Bob Casey (D-PA) held a hearing entitled “Uplifting Families, Workers, and Older Adults: Supporting Communities of Care,” which examined the economic benefit of investing in Medicaid home and community-based services (HCBS). Millions of seniors and people with disabilities nationwide rely on caregivers to provide everyday services like help with bathing, eating, and managing medications. The caregivers providing these life-sustaining services often live in poverty; direct care workers earn a median wage of roughly $14 per hour. Investing in home care would address the decades-long workforce shortage crisis, creating jobs and allowing family caregivers to return to their careers if they wish. It would also help raise wages and improve benefits for caregivers, which would boost economic activity and consumer spending.

Chairman Casey also introduced a new bill, the HCBS Access Act, which would, over time, eliminate the lengthy waiting lists for home care services. While the majority of seniors and people with disabilities have reported a preference for receiving care at home, they may be forced to live in an institutional setting just to access the services they need, due to long wait lists. The HCBS Access Act would put home care on equal footing with long-term care facilities under Medicaid, ensuring eligible older adults and people with disabilities have a real choice of care and support options. U.S. Representative Debbie Dingell (D-MI-6) introduced companion legislation in the House.

“The caregiving crisis in this country leaves millions of seniors and people with disabilities without a meaningful choice of where they can receive essential, life-sustaining care. It corners many family caregivers into upending their careers and living on poverty wages or performing unpaid work because they have no other options. This is not the way that a great Nation treats seniors and families,” said Chairman Casey. “It is time we make the smart economic investment in home and community-based services. My HCBS Access Act would provide seniors and people with disabilities with a real and significant choice between receiving care in a long-term care facility or at home, where so many of them wish to stay, and ensure that paid caregivers can turn poverty jobs into family-sustaining jobs.”

People eligible for Medicaid long-term services and supports (LTSS) are offered immediate access to nursing homes or other institutional settings. However, if they want to remain in their homes with the help of Medicaid HCBS, they are often put on a waiting list and can wait years or even decades for direct care services as Medicaid will not pay for home care unless a waiver has been granted. Because so many people are on waiting lists for Medicaid HCBS, most long-term care is provided by family, and most family caregivers are unpaid. The average family caregiver spends over a quarter of their income on caregiving activities and many must forgo promotions or work reduced hours in order to provide care.

Earlier this year, Chairman Casey introduced the Better Care Better Jobs Act, which would enhance Medicaid funding for home care services. This bill would strengthen the caregiving workforce, improve quality of life for families, and boost the economy by creating good-paying jobs to make it possible for families and workers alike to thrive economically.

Chairman Casey invited Jacinta Burgess, a home care worker from Harrisburg, PA, to testify at the hearing about her experience caring for her mother full-time. Ms. Burgess testified, “So many home care workers take on second or third jobs to earn more income, but I'm unable to work outside my home due to the care my mother requires. It’s not safe for her to be on her own for too long…Now, I am my mother’s eyes, ears, mouth, hands and feet.”

She also said, “A severe shortage of home care workers forces many working families to choose between caring for a loved one and a paycheck. Just like me, working people are too often forced to leave their jobs or stop working entirely when the need for care arises in their family. Oftentimes, it’s because they can’t afford the cost of care, or in some communities, there aren’t enough caregivers or resources to meet their needs.” Read Ms. Burgess’ full testimony here.

The HCBS Access Act is cosponsored by U.S. Senators Maggie Hassan (D-NH), Sherrod Brown (D-OH), Tim Kaine (D-VA), Kirsten Gillibrand (D-NY), Richard Blumenthal (D-CT), Peter Welch (D-VT), John Fetterman (D-PA), Jeff Merkley (D-OR), Bernie Sanders (I-VT), Tammy Baldwin (D-WI), Tammy Duckworth (D-IL), Elizabeth Warren (D-MA), Jack Reed (D-RI), Edward Markey (D-MA), Jeanne Shaheen (D-NH), and Patty Murray (D-WA).

Read more about the HCBS Access Act here.

Read more about the Better Care Better Jobs Act here.