Policy relief for family caregivers seems stalled out. But there are signs of change : NPR

In early December, Andy Kim took to the Senate floor to give his first solo performance. speech. Traditionally, this is a formal introduction, a chance for the new congressman to state what he stands for.

Kim, a New Jersey Democrat, told the story of how his father had been diagnosed with Alzheimer's disease just weeks earlier. After the meeting, Kim said he sat in his car in shock, repeating the words of the doctor who warned him his next year would be hell.

Kim said the cost of care has already become “catastrophic” for his family. “Why is it so difficult to provide care in this country?” he asked. “Why is providing care so insanely difficult?”

Conclusion: Caring for a family is so difficult that not even a US senator can do it.

And even the senator doesn't know how to fix it.

There is a consensus that something needs to change. Kim chose to focus this rant on family care because it resonates: An estimated 63 million Americans are currently caring for older or chronically ill adults. survey from AARP and the National Alliance for Caregiving.

And 79% of Republicans and 89% of Democrats agree that the government needs to do more to help people caring for family members. In 2024, both presidential candidates promised to do something about it.

However, nothing much has happened at the national level since then. But changes are already underway, say policy observers and caregiver advocates. The COVID-19 pandemic has made family care more visible and changed its image. Since then, caregiving has increasingly been perceived as a labor and economic problem—a social problem, rather than simply a family problem.

A broad coalition called Caring can't wait brings together the interests of work, aging and disability. He pushes to put family care on the national agenda by lobbying politicians, organizing events and raising awareness.

In the past few years, state governments have begun implementing policies to help caregivers, such as tax breaks, an innovative state long-term care insurance program, and new job protections for working caregivers. State-level policy experiments like these often create momentum for change at the national level, policy experts say.

“There's been tremendous momentum in the last five years that I haven't seen in the last 20 years,” says Alison Barkoff, a health law professor at George Washington University and former assistant secretary for aging at the Department of Health and Human Services. “I feel optimistic that this sets the stage for something big.”

Growing needs and varied support

The number of adult family caregivers has already doubled since 2014. And seniors are now the fastest growing age group in the country.

Half of them will eventually need daily help with even simple tasks such as cooking, dressing and housekeeping. Some will require much more extensive care.

This task will largely fall on the shoulders of family and friends because most people cannot afford to pay someone else to do it. Forty hours of paid care assistance per week costs approximately $71,000 per year. The average annual nursing home bill is $110,000. Medicare covers almost none of this.

Family caregivers spend an average of $7,242 on out-of-pocket expenses each year, according to a 2021 AARP survey. About a third go into retirement savings or take on credit card debt to cover expenses such as nursing home fees, home improvements, medical bills or adult day care.

“The cost of long-term care is exponentially higher than things like child care, which get much more attention in the national media,” says Nicole Jorvik, chief program officer for Caring Across Generations, an advocacy group focused on caregiving issues.

There is currently no national system to let family carers know what help may be available. Eligibility rules vary widely, and caregiving programs or assistance are provided by a variety of organizations, from state and local governments to the Veterans Administration and nonprofit organizations. The programs are not linked to each other, so caregivers must learn each one separately.

And national policymakers have taken no action to address the cash shortage or integrate isolated sources of support into a real safety net.

The most significant federal care-related action in 2025 was cutting nearly $1 trillion from the Medicaid budget over the next 10 years, which experts predict that this will lead to a reduction for some of the approximately 4.5 million family caregivers paid under the program. “Even the patchwork that existed is falling apart,” says Jorvik.

The States are getting involved

At the state level, the picture is more promising. Across the country, lawmakers are trying policies to cover the costs or provide new forms of aid. These experiments are spreading quickly.

In 2023, Oklahoma and Nebraska became the first states to pass tax credits for family caregivers. Since then, Georgia, Missouri, New Jersey, North Dakota and South Carolina have followed suit. About a dozen states are debating similar bills, said Megan O'Reilly, vice president of health and family affairs for AARP, which advocates for the laws. The loans reimburse family members for expenses such as home repairs or paid assistance, usually limited to $2,000 to $3,000 per year.

Some states also subsidize respite care in the form of short-term paid care or institutional care so that family caregivers can take a few days off or attend to other responsibilities.

About 60% of family caregivers also work; many states are making changes to labor laws to help them cope with both responsibilities. The federal Family and Medical Leave Act, which requires some employers to provide up to 12 weeks of unpaid leave, applies to less than half of all American workers.

Over the past few years, 13 states and Washington, D.C., have passed laws requiring employers to offer up to 12 weeks of internships. paid family vacation. Similar programs are currently underway in Maine, Delaware and Minnesota. In these programs, costs are covered by payroll taxes, similar to unemployment insurance. Ten other states, including Texas and Virginia, do not require paid leave and employers can add a benefit to it by purchasing commercial insurance.

In other states, laws that allow caregivers to take paid or unpaid leave now apply to in-laws, domestic partners, or even close friends. Other states, counties and cities, such as Delaware, Monroe County in Florida and Battle Creek, Michigan, have created rules that explicitly protect against workplace discrimination so workers cannot be fired or demoted because of their caregiving responsibilities.

The government's most ambitious program to support carers to date will launch in the next few days. In 2023, Washington workers began paying into universal long-term care insurance. In 2026, qualified workers will be able to tap into this pool to pay for in-home care, home repairs, and even food and transportation up to $36,000 over a lifetime. Seven other states are considering similar programs, including major ones like California and New York.

Overall, one or more of these policies apply to most child care providers in 25 states and 31 cities.

The Coming Caring Movement

These new laws bring even more changes to this picture. At the federal level, administrative changes to Medicaid rules over the past few years have also made it easier for some caregivers to receive training and assistance. But a truly comprehensive system of support for caregivers will require vision, big policies and big budgets, say policy experts and advocates who oversee long-term care.

For example, in 2021, Reps. Tom Suozzi, D-N.Y., and John Moolenaar, D-Mich., introduced a bill to create a national long-term care insurance program to cover catastrophic care costs. Payments will begin only after the family has covered its bills for at least a year. The idea is not only to help families, but also to revitalize the long-term care insurance market, which currently covers only about 5% of the cost of care nationwide. This bill is, in part, supported by the National Alliance for Caregiving. It was reintroduced in 2025.

The Care Can't Wait coalition's goals include a comprehensive paid family and medical leave law that would cover all working caregivers.

The coalition's top agenda item: expanding Medicare to pay for long-term care. This idea has been proposed several times since the law was written in 1965. Kamala Harris' presidential campaign has floated a modest version of the plan, with an estimated price tag of $40 billion a year.

Advocates acknowledge that such an ambitious national effort may not be realistic at this time. But the sheer number of struggling family caregivers and the value of their work, estimated at $600 billion a year in 2021, will force change, especially as the number of older adults and people with disabilities continues to rise.

“As a society, we are at a turning point,” says Jorvik. “Economic forces will drive solutions.” The ultimate goal is to fuel the new care movement that Kim called for in his speech.

According to O'Reilly, there are already some minor changes. When she and other AARP representatives meet with legislators, they no longer have to explain what family care is and why it's important. Most often, one of the employees has personal experience with this.

“People are interested in this issue and sharing their stories,” she says. “This is a transformation from where we started this work.”

Kat McGowan is a California-based freelance writer specializing in nursing.