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Collins’ Bipartisan Bill to Support the Health and Wellbeing of Family Caregivers Clears Committee


MAY 23, 2024, Washington, D.C. – Today, the U.S. Senate Health, Education, Labor, and Pensions (HELP) Committee voted 19 to 2 to advance the Lifespan Respite Care Reauthorization Act of 2024, bipartisan legislation introduced by Senators Susan Collins and Tammy Baldwin (D-WI) that would reauthorize the Lifespan Respite Care program through Fiscal Year 2029. The bill now awaits consideration by the full Senate.

“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. “I saw this in my own family, where my mother took care of my father who was suffering from Alzheimer’s disease for eight years, until he went into the veterans’ home in our hometown of Caribou. Respite care was really nonexistent for her, other than that provided by family members. 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.”

“The inclusion of Caregiving Youth to have the benefit of respite care is a giant step of national recognition and support – for them, their family and our society,” said Connie Siskowski, RN, PhD – Founder and President, American Association of Caregiving Youth. “On behalf of the American Association of Caregiving Youth, representing the more than five million children who are both students and family caregivers, wants no child in our country to have to drop out of school to provide care for family member(s)!”

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) would be eligible. 

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.

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 Lifespan Respite Care Reauthorization Act of 2024 is endorsed by AARP, the American Association of Caregiving Youth, the National Respite Coalition, the Autism Society of America, and the Alzheimer’s Association.