State policies build momentum for family caregivers amid federal inaction

Federal support for family caregivers remains stalled, but state-level initiatives are gaining traction to ease the burden on millions of Americans. In a recent Senate speech, New Jersey Democrat Andy Kim highlighted the personal and financial toll of caregiving for his father with Alzheimer's. Advocates point to growing awareness and policy experiments as signs of potential national change.

In early December 2025, U.S. Senator Andy Kim, a Democrat from New Jersey, delivered his first solo speech on the Senate floor, sharing the recent Alzheimer's diagnosis of his father. Kim described sitting in shock after the doctor's appointment, warning of a challenging year ahead, and called the costs "catastrophic" for his family. He questioned why providing care in the U.S. is so difficult and complicated.

This personal story underscores a broader crisis: An estimated 63 million Americans provide care for elderly or chronically ill adults, according to a survey by AARP and the National Alliance for Caregiving. The number of such caregivers has doubled since 2014, as older adults become the nation's fastest-growing demographic. About half will eventually need help with daily tasks like cooking or dressing, often relying on family due to high costs—$71,000 annually for 40 hours of paid in-home care or $110,000 for a nursing home. Medicare covers almost none of these expenses, leaving family caregivers with average out-of-pocket costs of $7,242 per year, per a 2021 AARP survey. Many dip into retirement savings or accrue debt.

Bipartisan support exists: 79% of Republicans and 89% of Democrats agree the government should do more, and both 2024 presidential candidates pledged action. Yet, national progress is limited. The most significant 2025 federal move trimmed nearly $1 trillion from Medicaid over 10 years, potentially cutting aid for 4.5 million paid family caregivers. "Even the patchwork that did exist is getting shredded," said Nicole Jorwic, chief program officer at Caring Across Generations.

States are filling the gap. In 2023, Oklahoma and Nebraska pioneered tax credits for caregivers, reimbursing up to $2,000-$3,000 for expenses like home modifications; Georgia, Missouri, New Jersey, North Dakota, and South Carolina followed, with a dozen more considering them. Thirteen states plus Washington, D.C., now mandate up to 12 weeks of paid family leave, funded by payroll taxes, while others expand protections against workplace discrimination for caregivers.

Washington state's ambitious program, launched in 2023, collects contributions for universal long-term care insurance; benefits start in 2026, covering up to $36,000 lifetime for in-home care and modifications. Seven states, including California and New York, are exploring similar plans. The Care Can't Wait coalition, uniting labor and aging groups, pushes for national reforms like expanded Medicare coverage.

"There's been huge momentum in the last five years that I have not seen in the last 20," said Alison Barkoff, a health law professor and former assistant secretary of aging. Advocates like Megan O'Reilly of AARP note lawmakers now connect personally with the issue, signaling a shift toward viewing caregiving as an economic imperative worth $600 billion annually.

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