caregivers

They need a break, therapy and pay.

Is America on track to help?

Madeline Mitchell USA TODAY

Family caregivers need a break. Their seemingly endless responsibilities leave little time for themselves, leading to myriad physical and mental health challenges, stunted career growth, crippling guilt and worries about the future. ● USA TODAY launched The Cost of Care survey in May, asking readers about their caregiving experiences and what solutions would make caregiving easier. Nearly 450 people responded, many suggesting potential fixes to America’s caregiving crisis. ● “Even just running to the grocery store concerns me because I have to leave mom alone,” one caregiver wrote. ● “It would have been nice if I could have gotten a day or two off on a regular basis,” another respondent said. ● Is universal respite care possible in America? What about free mental health services? Caregiving coaches? USA TODAY spoke with experts to determine the feasibility of respondents’ dream solutions.

ILLUSTRATION BY DANI CHERCHIO/USA TODAY NETWORK; AND GETTY IMAGES

Universal respite care

Universal in-home care and respite care is “totally possible” − with federal funding, said Ai-jen Poo, executive director and board secretary for Caring Across Generations and president of the National Domestic Workers Alliance.

Former President Joe Biden earmarked $400 billion in his American Jobs Plan for Medicaid home and community-based services, Poo said. That’s the program that serves about 70% of people who receive in-home care. “The idea was to invest in that program (and) fully fund it so that there’s nobody on the waiting list, and you can also raise the wages for home care workers,” she said.

But that plan never came to fruition, and now President Donald Trump is defunding Medicaid.

Still, Poo is hopeful. In the future, she said, America could build on Biden’s American Jobs Plan to also offer Medicare-funded at-home care, so there’s no income eligibility requirement for respite.

Diane Ty, managing director at the Milken Institute Future of Aging, is less optimistic about a federally funded respite program because demand outweighs the supply of care workers − particularly high-quality, trained care workers that families can trust. But there are employee benefit programs that offer backup care, said Priyanka Shah, associate director at Milken. Larger companies, especially, tend to partner with organizations like Bright Horizons, Care.com, Wellthy, Homethrive and others to help with emergency respite.

There’s also proposed bipartisan legislation for a federal tax credit of up to $5,000, which caregivers could use for respite care or other care expenses.

Care navigators already exist

Caregivers want more resources and guidance for their own unique situations. Collectively, respondents envisioned a one-stop shop, coach or hotline they could call with questions about medical equipment, insurance policies, applying for Social Security, how to establish power of attorney and any other care-related inquiries.

In fact, there are several care concierge platforms that do just that, Ty said. They are often offered as employee benefits through contracts with Wellthy, Cariloop, Ianacare and other care companies. But many people don’t identify as caregivers, so they might pass over “caregiver benefits” without realizing it’s the help they are seeking. Years ago, when Ty’s father was ill with Alzheimer’s disease, Ty said she hired a geriatric care manager. “It was the best money I spent,”she said, and she recommends it to anyone who can afford it. The manager went through her dad’s medical records, interviewed Ty and her family members and came up with a course of action. Care managers typically charge between $50-$200 per hour, according to Paying for Senior Care; Medicare, Medicaid and health insurance rarely cover the service.

Care.com, one of the largest online family care marketplaces, recently launched a senior care navigator program where caregivers can connect with an adviser at a lower cost. These advisers assist families in creating an individualized care plan over the course of 90 days for $350.

The advisers are in-house, master’s-level social workers “helping families navigate really challenging, really emotional, really personalized, unique situations,” Brad Wilson, CEO of Care.com, told USA TODAY.

There’s also Caregiving.com, a resource library, which is free. And 211 hotline workers in more than 15 states are trained to listen for caregiver-specific plights, among other social service needs.

“One challenge we have is that there’s so many different kinds of caregiving,” Poo said. Resources for a dementia caregiver will be different from those for a person caring for a child with cancer. She’s not sure there’s a true “one-stop shop” for caregivers just yet, but said artificial intelligence is making it easier to find resources. She said this is a space ripe for tech and AI innovation.

Free counseling for caregivers

Dozens of respondents said they’d like access to mental health help, stress relief and emotional support. Ideally, some wrote, that help would be free for caregivers who deal with so much.

However, we’re a long way from that. There are employee assistance programs, like Calm Health, that help working caregivers connect with mental health counselors for no or low cost, Shah said. Some companies even offer endof- life doulas who can help families work through their grief and the lasting impacts of caregiving. Hospice care, a Medicare benefit that Ty said is underutilized, also offers grief counseling.

There are in-person and virtual caregiver support groups available through employers, local churches and other faith-based groups in addition to condition-specific support groups.

But it’s unlikely caregivers will have universal free access to therapy any time soon, Poo said, because of America’s mental health worker shortage.

Demand for counseling services is at an alltime high.

“Waiting lists for youth mental health counselors and therapists are so long,” Poo said. “I find it to be very scary.”

Expanding paid family caregiver programs

Several states offer paid family caregiver programs through Medicaid and the Department of Veterans Affairs. Poo said California’s program is one of the country’s best, and should be looked at as a model to be scaled nationwide.

As with universal respite care, Poo said, expanding family caregiver pay will require federal support. But she hopes it does happen eventually because “I don’t see how we manage otherwise.”

Supporting a national paid family caregiver program is difficult, Shah said, because “everything costs a different amount depending on where you live.”

In the meantime, Ty said there are some startups, including RubyWell, that are piloting partnerships with home care agencies to train and pay family caregivers.

Help for families who ‘make too much’

“Medicaid should be automatic for children with my child’s type of complex medical needs, not family income-based,” one survey respondent said.

Another noted that her mother-in-law’s income is just $100 per month above Medicaid eligibility.

“Resources are available, but I don’t have the income to afford them,” another wrote.

Ty said there is no simple solution for helping families stuck in the middle: the ones who make too much to qualify for federal support and too little to afford support on their own.

Poo doesn’t have an immediate answer for these families, either, other than to keep fighting for universal health care. She can’t think of many state or local programs that do a good job of catering to middle-class families, though New Mexico’s new universal free child care program is a start. And in 2026, Washington state is launching a long-term elder care program that could spark solutions elsewhere.

Universal health care is complicated, Shah said. But she thinks caregivers might be satisfied with something a little simpler: stable, affordable health insurance “that doesn’t disappear just because their work hours change.”

“We just need more stabilizing steps,” Shah said, “rather than trying to focus on something as large as universal” health care.

Madeline Mitchell’s role covering women and the caregiving economy at USA TODAY is supported by a partnership with Pivotal and Journalism Funding Partners. Funders do not provide editorial input.

ILLUSTRATION BY DANI CHERCHIO/USA TODAY NETWORK; GETTY IMAGES