In 2021, the Utah Legislature passed Senate Bill 63, an amendment to the state’s Medicaid HCBS (1915) waiver that provides temporary financial support for family caregivers.
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The legislation was in response to the unprecedented number of licensed caregivers who left the profession during the pandemic and forced family members to fill their roles.
Utah families received on average $593 per week for providing extraordinary care, which was defined as 40 hours or more per week, to the person in need. Legislators are expected to take up the issue of extending more permanent support beyond 2023 when the waiver amendment is set to expire.
The Utah Family Caregiving Collaborative (UFCC), a network of academics, clinicians, and community stakeholders led by the University of Utah (U of U), reports there are 336,000 family caregivers in Utah whose unpaid work is valued at $4.2 billion.
UFCC says the financial support families receive is far less than the compensation for professional care and needs to be recalibrated to meet the rising costs and be better suited to support the medical responsibilities that this unpaid workforce has taken on.
“There’s a lot of action to elevate family caregiving as a public health issue,” said Rebecca Utz, PhD, Senior Faculty Associate at the U of U College of Social and Behavioral Science and member of UFCC’s leadership.
“What we mean by this is that if we can support the family members that are providing care to people with disabilities, dementia, aging, chronic illness in the homes, we actually are saving a lot of health care dollars. We think about caregivers as preventative healthcare that allows us to not rely as much on repeat hospitalizations [and] emergency room visits. If we can support the family to keep the person at home, then it saves everyone.”
Utz says oftentimes families are dealing with their own health concerns or neglecting their health while providing around-the-clock care for loved ones, which also contributes to stress and burnout.
“The problem becomes [one where] if we can’t support and protect the health of the caregiver, then we all end up with 2 people that need care,” Utz said. “Whereas if we support the caregiver, they are saving healthcare dollars by providing that care at home.”
The US Department of Health and Human Services recently outlined a national strategy to support family caregivers that contains 350 federal actions in the coming year. The plan also highlights 150 actions public and private sectors can adopt at the local level to build a system of family caregiving support.
The recommendations include building outreach to families, developing data and best practices, and implementing financial and employment protections. Under previous federal guidance on family caregiving, UFCC developed a state plan that outlines a set of goals and priorities to meet by 2030. They center around public awareness, services and supports, healthcare integration, financial and workforce protections.
Debra Scammon, Senior Faculty Associate of UU David Eccles School of Business and member of UFCC leadership, told State of Reform that Utah should consider broader recognition and acknowledgement of the role that family caregivers play in crafting policy concerning family caregivers.
“Many family caregivers don’t identify themselves as family caregivers,” Scammon said. “They’re just family and that’s what families do, is take care of other members of the family. So we want people who are stepping up and caring for a family member to be proud of that fact and to be celebrated for the fact that they’re stepping up.
Another one that we hear over and over again is support for respite. Family caregivers feel that they can’t step away, that they can’t leave their family member, that nobody else can step in and help out. And after years of caring for somebody that is disabled or has cognitive impairment, it gets to be so stressful. Even a few hours, even a few minutes away where they can think about themselves and take care of themselves is really a significant goal.”
Utah currently has at its disposal a Medicaid expansion fund surplus of $170 million that is expected to grow to $250 million next year. Should the proposal to extend family caregiver reimbursement be introduced next session, the Utah Health Policy Project (UHPP), which drives Medicaid expansion efforts in the state, says it and other measures around expansion will have the fiscal latitude for bipartisan support.
“There’s always going to be some disagreement about who’s paying for healthcare and how it’s being paid for, but by and large Utah is a Medicaid expansion state,” said Daniel Sloan, Health Policy Analyst for UHPP. “[Utah is] a Republican state, but an expansion state, and lawmakers of both parties are broadly supportive of providing more care.”