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Collins, Baldwin Introduce Bipartisan Legislation to Support the Health and Wellbeing of Family Caregivers

Washington, D.C. – Last week, U.S. Senators Susan Collins and Tammy Baldwin (D-WI) introduced legislation to support the health and wellbeing of family caregivers. The Lifespan Respite Care Reauthorization Act of 2024 would reauthorize the Lifespan Respite Care program through fiscal year 2029.

One in five adults – 53 million people –in the United States provide long term care to persons who are aging, disabled, or chronically ill.  In Maine, there are 166,000 family caregivers who provide 155 million hours of care to loved ones each year. Additionally, there are more than 5 million children in the U.S. who provide care for aging grandparents, parents, or siblings with disabilities.   

“In my conversations with family caregivers, I have found what they need most is respite care, a break from the 24/7 job of caregiving.  Caregivers provide an estimated $600 billion in uncompensated care each year.  Yet, an astounding 85 percent of caregivers have not received any respite services at all,” said Senator Collins. “Respite care is essential to caregivers as it helps to reduce mental stress and physical health issues they may experience.  With the introduction of this bill, we are one step closer to giving family caregivers and their loved ones the support they need by ensuring that quality respite is available and accessible.”

“After serving as my grandmother’s primary caregiver as she got older, I know firsthand the time, dedication, and sacrifices it takes to keep our aging, disabled, or sick loved ones safe and well,” said Senator Baldwin. “Caregiving can be a 24/7 job, and too often family caregivers compromise their own health to ensure their loved ones are not left in limbo. Respite care offers family caregivers a necessary break to focus on their own mental health and well-being. I am proud to stand with family caregivers to ensure they have the support they need to continue the invaluable work they do of caring for their loved ones.”

Specifically, the Lifespan Respite Care Reauthorization Act of 2024 would:

  1. Reauthorize the Lifespan Respite Care program at current appropriations levels for five years (FY25-29).
  2. Clarify that youth caregivers (those under 18 who are providing care or helping to provide care to family members) are eligible for the program. 

According to AARP, more than a third of family caregivers report wanting support like respite services, yet only 14 percent receive them, even as research indicates that caregivers who use respite have lower caregiver distress and better health and sense of well-being.

Respite care provides temporary relief to caregivers from their ongoing responsibilities.  By protecting the health of caregivers, respite care decreases the need for professional long-term care and allows individuals who require care to remain at home. To date, 38 states have received funding through the Lifespan Respite Care program, which provides competitive grants to states to establish or enhance statewide respite resources and help ensure that quality respite is available and accessible to all family caregivers.

Senators Collins and Baldwin championed legislation in 2020 to authorize the Lifespan Respite Care program through fiscal year 2024.  The Lifespan Respite Care Reauthorization Act of 2024 would ensure this programming continues beyond the end of the fiscal year. The bill is endorsed by the National Respite Coalition, the Autism Society of America, and the Alzheimer’s Association. 

The complete text of the bill can be read here.