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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Elderly woman distressed by nursing home bill over 3200 euros monthly in Germany, with rising cost graph and empty savings.
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Nursing home costs rise above 3200 euros monthly

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Monthly out-of-pocket costs for nursing homes in Germany have risen further at the start of 2026. According to AOK and vdek data, the national average in the first year is around 3200 to 3245 euros. Insurers' associations are calling for reform to limit the burden.

AARP Virginia has announced its 2026 legislative priorities, with volunteer advocates set to press lawmakers when the General Assembly convenes on January 14. The agenda focuses on reducing prescription drug prices, establishing paid family and medical leave, and enhancing protections for older residents. Key proposals include creating a board to cap high-cost medication payments and streamlining access to home care services.

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China will expand its long-term care insurance program nationwide in the coming years, with supporting policies to address rising needs for elder and disability care amid rapid aging, according to the National Healthcare Security Administration. Piloted since 2016 in 49 cities, it now covers nearly 300 million people.

After the U.S. Senate rejected dueling plans to address expiring Affordable Care Act subsidies, the fight has spilled into 2026 midterm politics and shifted pressure to the House, where Republicans are advancing alternative premium‑relief ideas while centrists push for an extension.

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As the population ages, more people are affected by memory diseases like Alzheimer's. However, research in the field is progressing slowly, and only about half of those affected receive the available treatment.

The Supreme Court of Justice of the Nation (SCJN) declared unconstitutional an IMSS regulation provision that limited death pensions only to direct ascendant family members. Now, individuals who demonstrated a caregiving relationship with the deceased worker can also access the benefit. This decision stems from a case where an aunt who raised the insured was initially rejected.

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A recent National Bureau of Economic Research report reveals that American families face $400 to $900 in yearly climate-related expenses. These costs stem from extreme weather events impacting insurance, energy, taxes, and health. The study highlights rising burdens, especially in disaster-prone areas.

 

 

 

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