Policy relief for family caregivers appears to be at a standstill. But there are signs of change: NPR

In early December, Andy Kim took to the Senate floor and delivered his first solo speech. Traditionally, this is a formal introduction and an opportunity for new members to announce their position.

Kim, a Democrat from New Jersey, told the story of how her father was diagnosed with Alzheimer's disease just a few weeks ago. After the appointment, Kim said she sat in her car in shock, repeating the words of doctors who had warned her that the next year would be hell.

Kim said the cost of care has already been “devastating” for her family. “Why is it so difficult to provide care in this country?” he asked. “Why is providing care so complex?”

Lesson: Caring for a family member is so difficult that even a U.S. senator would be overwhelmed.

And even the senators don't know how to fix it.

There is a consensus that something needs to change. Kim chose to focus this high-profile speech on family caregiving because it resonates. An estimated 63 million Americans currently care for older or chronically ill adults, according to research from AARP and the National Alliance for Caregiving.

Additionally, 79% of Republicans and 89% of Democrats agree that the government needs to do more to support people caring for family members. Both presidential candidates have promised to do something about this issue in 2024.

But since then, nothing has happened at the national level. But policy observers and caregiver advocates say change is afoot. The coronavirus pandemic has made family care more visible and changed its image. Since then, care has increasingly been recognized as a labor and economic issue, that is, a social issue rather than just a family issue.

A broad coalition called Care Can't Wait brings together labor, aging, and disability interests. By lobbying policymakers, organizing events and raising awareness, we are putting family care on the national agenda.

In recent years, state governments have begun implementing policies to support caregivers, including tax breaks, innovative public long-term care insurance programs, and new job protections for working caregivers. Policy experts say such state-level policy experiments often build momentum for national change.

“There's been a lot of momentum in the last five years that we haven't seen in the last 20 years,” said Alison Berkoff, 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 is a stepping stone to something big.”

Growing needs and patchwork of support

The number of adult family caregivers has already doubled since 2014. Additionally, older adults are now the fastest growing age group in the country.

Half of them will eventually need daily help with simple tasks like cooking, dressing, and doing housework. Some people may require more extensive care.

Most people can't afford to pay someone else to do it for them, so they end up leaving the job primarily to family and friends. 40 hours of paid caregiving per week equates to approximately $71,000 per year. The average annual cost of a nursing home is $110,000. Medicare rarely covers it.

A 2021 AARP study found that family caregivers pay an average of $7,242 out of pocket each year. About a third of them dip into retirement savings or take out credit card debt to cover costs such as assisted living facilities, home improvements, medical bills and adult day care.

“The cost of long-term care is exponentially higher than something like child care, which receives far more attention in the national media,” said Nicole Jolwich, chief program officer at care-focused advocacy group Caring Across Generations.

There is currently no national system for family caregivers to find available support. Eligibility regulations vary widely, and caregiving programs and assistance are administered by numerous entities, from state and local governments to the Department of Veterans Affairs and nonprofit organizations. These programs are not related to each other, so caregivers should investigate each separately.

And national policymakers have not taken action to address funding gaps or build isolated sources of support into real safety nets.

The most significant long-term care federal action in 2025 will be to cut nearly $1 trillion from the Medicaid budget over the next decade, which experts predict will lead to cuts in some of the approximately 4.5 million family caregivers paid through the program. “Even the patchwork that once existed is being chopped up,” Jorvich says.

the state intervenes

The outlook at the state level is more promising. Lawmakers across the country are experimenting with policies that would cover costs or provide new forms of support. These experiments are spreading rapidly.

In 2023, Oklahoma and Nebraska became the first states to introduce tax credits for family caregivers. Georgia, Missouri, New Jersey, North Dakota and South Carolina have since followed suit. More than a dozen other states are considering similar bills, said Megan O'Reilly, vice president of health and families at AARP, which advocates for these laws. This credit reimburses family caregivers for expenses such as home improvements and paid assistance, and is typically capped at about $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 obligations.

Approximately 60% of family caregivers also work. Many states have amended their employment laws to manage both responsibilities. The federal Family and Medical Leave Act requires certain employers to provide up to 12 weeks of unpaid leave, but it covers less than half of all U.S. employees.

In recent years, 13 states and Washington, D.C., have passed laws requiring employers to provide up to 12 weeks of paid family leave. Similar programs are currently being rolled out in Maine, Delaware, and Minnesota. Payroll taxes cover the costs of these programs, similar to unemployment insurance. In 10 other states, including Texas and Virginia, paid leave is optional and employers can add benefits by purchasing commercial insurance.

In other states, laws that allow caregivers to take paid or unpaid leave now include in-laws, companions, and even close friends. Other states, counties and cities, including Delaware, Monroe County, Florida, and Battle Creek, Michigan, have enacted rules that explicitly protect against discrimination in the workplace, saying workers cannot be fired or demoted because of their caregiving responsibilities.

The state's most ambitious carer support program to date will be rolled out in the coming days. In 2023, Washington state workers will begin paying into the fund for universal health care. In 2026, eligible workers will be able to tap into this pool to pay for home care, home improvements, and even food and transportation expenses up to a lifetime cap of $36,000. Seven other states are considering similar programs, including large states like California and New York.

One or more of these policies apply to the majority of caregivers across 25 states and 31 cities across the country.

Future care movement

These new laws add to the patchwork. At the federal level, administrative adjustments to Medicaid regulations in recent years have also made it easier for certain caregivers to receive training and assistance. But a truly comprehensive caregiver support system requires a vision, big policies and big budgets, policy experts and advocates who oversee long-term care say.

For example, in 2021, Rep. Tom Suozzi (D.N.Y.) and Rep. John Moolenaar (R-Mich.) introduced legislation that would create a national long-term care insurance program to cover catastrophic care costs. Payments will only begin after families have covered their 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 long-term care costs nationwide. This bill is supported by, among others, the National Caregiving Alliance. Reintroduced in 2025.

The Care Can't Wait coalition's goals include comprehensive paid family and medical leave legislation that covers all working caregivers.

The coalition's main attraction is expanding Medicare to pay for long-term care, an idea that has been proposed repeatedly since the law was enacted in 1965. Kamala Harris' presidential campaign offered a more modest version of the plan, estimated at $40 billion a year.

Supporters 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 annually in 2021) will force change, especially as the elderly and disabled population continues to grow.

“As a society, we're really at a tipping point,” Jorvich says. “Economic power will drive solutions.” The ultimate goal is to foster the new care movement that Kim called for in his speech.

O'Reilly says he's already seeing subtle 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 likely someone on staff has personal experience with it.

“People are empathizing with this issue and sharing their stories,” she says. “That's a change from when we started this work.”

Kat McGowan is a California freelance writer specializing in long-term care.