How Harris, Trump are courting the caregiver vote before election

After Dionne McCray’s stepfather suddenly collapsed in 2020, she packed up her belongings, sold her house in Oakland, California, and moved back into her childhood home in Orange County to care for him.

Eleven months later, he died of heart failure, but McCray’s caregiving journey had just begun. Her mother’s memory issues were more extensive than she realized from hundreds of miles away, so McCray put her six-figure high-tech career on hold to provide almost round-the-clock care.

Throughout the day, she makes sure her 81-year-old mom eats right and exercises, gets to medical appointments, takes her medication and stays stimulated. At night, McCray sits with her mom to coax her back to sleep only then to lie awake herself worrying about the future.

Not only is McCray slowly draining her life savings to hire help and pay for medical supplies but, at 56 years old, she is looking for work and contemplating what was once unthinkable, dipping into retirement funds to afford her mom’s personal caregiver, who spells McCray 20 hours a week.

The emotional and financial strain has raised her blood pressure and cholesterol.

“How do I financially make sure she’s OK so when the time comes and she transitions, it’s peaceful and graceful and in a loving setting?” McCray said. “Because right now, I don’t know what’s going to happen. If her care increases, we can’t afford it.”

Even in an election year when the economy and inflation are the leading concern for voters, McCray says the struggles of families like hers rarely make headlines.

That changed earlier this month when Vice President Kamala Harris pledged to cover in-home care on “The View.” Former President Donald Trump’s campaign said he also supports the idea of covering home care.

The political attention coming as the Trump and Harris campaigns look to shore up support with seniors in the final weeks before the election “is an extraordinarily good thing,” said Adam Block, an associate professor of public health at New York Medical College. 

“Long-term care is a facet of American healthcare that has been overlooked for decades,” he said. 

Family caregivers provide $600 billion in unpaid care a year

As the nation ages, more Americans – adult children, spouses, siblings – are shouldering the burden of providing that care so their loved ones can remain in familiar surroundings and maintain some of their independence.

More than 1 in 5 Americans over 50 spend time caring for someone else. This largely invisible workforce provides about $600 billion in unpaid care each year, according to AARP.  

“These family members are holding up not just their families, but also our long-term care system,” said Megan O’Reilly, AARP’s vice president of government affairs for health and family.

Most older Americans want to stay in their current homes as they age, according to an AARP survey. But the associated costs have soared. 

Just 1 in 5 Americans 65 and older would have the resources needed to cover severe care needs, according to the Center for Retirement Research at Boston College. About a third could not even afford a year of minimal care.

That puts many people in a financial bind. Medicare  – the federal health insurance program for Americans 65 and older and those with qualifying disabilities – only covers home health aides and other assistance under limited circumstances. Families often don’t earn enough to afford private care but earn too much to qualify for government aid. 

Research shows families end up providing about half the care hours themselves. The constant juggle means caregivers are often absent from work, lose pay and benefits and miss out on promotions. Some have to stop working altogether for a time. 

The time commitments can be lengthy. Almost one-third of caregivers have been caring for family members for five years or longer, according to the National Alliance for Caregiving and AARP.

Polling from the AARP shows that older voters want to support a candidate who cares about caregivers. Eighty-two percent of voters in a recent Pivotal Ventures and Morning Consult poll said making it easier for Americans to care for their loved ones should be an important or top priority for political candidates and policymakers.  

Asked what she would say to the presidential candidates, McCray broke down in tears. 

“People say: ‘You’re doing such a good job. You are such a great daughter.’ But at night when I look at her to make sure my mom is still alive, where are you?” she said. “I worked hard to be a part of the working class and now I am out on this island all alone and I am just waved at and told: ‘Hey, good luck.’” 

Trump and Harris court ‘sandwich generation’

In a document released at the Republican National Convention in July, Trump pledged to protect and strengthen Medicare and to prioritize care at home for the elderly, but he has provided few details.

Trump “will take care of our seniors by shifting resources back to at-home senior care, overturning disincentives that lead to care worker shortages, and supporting unpaid family caregivers through tax credits and reduced red tape,” Trump campaign spokeswoman Karoline Leavitt told USA TODAY. 

Harris has outlined a proposal to expand Medicare to cover home care. The issue is personal for Harris, who took care of her mother, Shyamala, when she was dying of cancer. 

The proposal was the latest campaign promise aimed at caregivers, especially the so-called sandwich generation, Americans who are raising children and caring for aging parents at the same time.

As a working mom from Boston, Liz O’Donnell, 57, cared for her parents and then for her husband while they were dying. Now she runs Working Daughter, an online community of caregivers. After Harris appeared on “The View,” she said the most common word used by family caregivers was “hope.”

“This is the start of a much bigger, better conversation about elder care,” O’Donnell said. 

For Lauren de la Fuente, having Medicare pay for home health care would be a game changer.

De la Fuente left her home in California in 2022 to care for her parents, both in their mid-90s, who live in Manhattan. Her mother has dementia, and her father, who has trouble walking, takes the occasional fall.

“I’ve worked for Fortune 500 companies and Silicon Valley startups and this is by far the hardest job I’ve ever had,” she said. 

Between her parents’ savings and de la Fuente putting out “a ton” of money, the family has been able to get by until now by paying out of pocket for their care, which includes in-home aides 12 hours a day. In the long run, that setup is just not tenable or affordable, she said.

Supporting American families caught between Medicare’s coverage gaps, strict limits of federal health insurance Medicaid and scarce private sector alternatives should not be a partisan issue, said Jason Resendez, CEO of the National Alliance for Caregiving.

“We want all candidates to be talking about the ways they are going to address the lack of support that’s in place for family caregivers,” Resendez said. “There is no shortage of opportunities to step up from a policy perspective to support family caregivers.”

‘There’s never enough hours in the day’

Josh Hodges, chief customer officer for the National Council on Aging, an advocacy group for older Americans, says America’s patchwork system to support aging adults is nearing a breaking point.

“There’s a huge need in this country for us to rethink care for older adults,” Hodges said. 

A big piece of that is making in-home care available to more families, he said. 

Barbara Tarallo’s husband, Tom, was in a motorcycle accident in 2010 that left him with a severe brain injury and physical disabilities. 

Before hiring a home health aide, it was Tarallo’s responsibility each morning to move him out of bed, get him to the bathroom, shower him and feed him. It wasn’t until 1 or 2 in the afternoon that she would begin her work day as a marketing and sales manager, with the job sometimes stretching until 1 a.m. Then, she’d wake up at 6 a.m. and do it all again.

“It’s a chore. And as we get older, it gets harder and harder,” said Tarallo, 62, who lives in Pelham, New Hampshire. While she’s strong enough to move her husband, “it wears on you. I’ve had to go to physical therapy myself a few times for shoulders and knees and back.” 

Today, she has an extra hand. Her home health aide is paid $35 an hour to work about six hours a week, helping shower and feed Tom so Barbara can get work done during the day.  

“She’s a school bus driver, and she’s as old as I am and she’s got two jobs,” Tarallo said. 

Between her aide’s wages and all of the medical equipment Tarallo purchases to care for her husband, she’s paying more than $11,000 a year on home care – a significant chunk of the roughly $65,000 Tarallo estimates she and her husband bring in each year from her job and his Social Security Disability Insurance. 

Still, it’s cheaper than a nursing home, which can cost roughly $10,000 per month. 

Tarallo said Medicare covering in-home care would be a “blessing,” and Harris’ focus on in-home care is one of the reasons she’s voting for her.

“It’s a lot emotionally, it’s a lot physically – it’s just a lot,” Barbara Tarallo said. Between juggling at-home care, a demanding job and running a household, “there’s never enough hours in the day.” 

Sara Schmidt was 35 years old when her mother, Brenda, who had early onset Parkinson’s and dementia, took a bad fall in 2021. Brenda’s decline after that felt like a “ski slope” downhill, said Schmidt, who lives in Brandon, Mississippi.

Even though Schmidt works professionally with families who are transitioning loved ones to hospice, she wasn’t prepared for how grueling the process was – not to mention how many expenses cropped up. Among them: having to pay her mother’s mortgage herself while she waited for the estate to go through probate. Brenda had some insurance policies, but those resources were limited. 

“It ran out very very quickly. We had more than enough until we didn’t,” Schmidt said. “It goes by really fast and that’s what most people are worried about.” 

Like many others, Schmidt thinks funding at-home health care through Medicare could “be a significant step forward” not just for individual families, but by reducing the burdens on the overtaxed health care system. She thinks the devil will be in the details but welcomes the discussion from both candidates.

“When will we reach a point when people can actually be taken care of without sacrificing their whole life savings?” she said.

Will the next president live up to the campaign promises?

Despite the campaign promises, public health experts say there is little political consensus on how to support aging Americans and previous attempts to expand in-home coverage have failed.

“I think it’s a really big step forward. At one point, we’re going to have to do this,” said David Grabowski, a professor of health care policy at Harvard Medical School. “I’m just not super optimistic that we’re going to see this in the coming years.” 

The Obama administration passed a long-term care insurance program in 2010, but Congress formally repealed the program three years later due to cost concerns, said Tricia Neuman, senior vice president at the health policy nonprofit KFF and executive director of its Program on Medicare Policy. The Biden administration proposed $400 billion in funding to expand access to Medicaid home and community-based services but it did not pass. 

Any in-home care coverage proposal would face significant hurdles. Expanding Medicare would require congressional approval. The main sticking point: the price tag.

Adding a modest universal home care program to Medicare – even one with conservative spending – would cost $40 billion annually, according to one Brookings Institution study. 

Mark Warshawsky, a senior fellow at the conservative think tank American Enterprise Institute, estimates that Harris’ proposal with no restrictions could cost upwards of $130 billion per year, a 14% jump in Medicare spending. 

Harris said she would pay for the expanded coverage from the money saved through expanded Medicare drug price negotiations. Warshawsky was skeptical that those savings would be enough.

He also worries the proposal would lower incentives for families to save money, buy private long-term care insurance and pitch in themselves.

“Many people can afford to pay for long-term home care. Some people have insurance, or they can get insurance. They have assets from 401(k) plans, their home,” Warshawsky said. “And depending on how severe the disability is, their children and family members can assist and take care of them if the need is not very great. But if somebody else is going to pay for it and provide home care, why bother the children?”

Home health worker shortage is key hurdle

Another key hurdle is the chronic shortage of home health and personal care aides, which is only expected to worsen as demand for in-home care soars with the rapidly aging population. 

2024 marked the beginning of the “Peak 65 Zone,” the largest surge of Americans turning 65 in the nation’s history, according to Jason Fichtner, chief economist at the Bipartisan Policy Center and executive director of the Retirement Income Institute. His research found that over 4.1 million Americans will turn 65 each year through 2027.

Making coverage more accessible could accelerate demand and put even more pressure on a strapped industry, said Paul Osterman, a professor emeritus at the MIT Sloan School of Management and author of “Who Will Care For Us? Long-Term Care and the Long-Term Workforce.” 

Already there’s high turnover in the field, which has median pay of just over $16 an hour. Home health care providers report turning away over a quarter of referred patients due to staff shortages, according to a 2023 report from trade groups Home Care Association of America and the National Association for Home Care and Hospice.

Brittany Kelly learned that lesson firsthand. The 34-year-old mother of two from Wilmington, North Carolina, quit working to care for her parents. 

Her mom caught COVID–19 and died in 2022. Her 82-year-old father, a military veteran who has vascular dementia and other health troubles, moved in with her in 2023. 

At first, Kelly scrambled to find a personal aide or home health aide but now the family gets by on her husband’s salary with a construction company.

“We were paying top dollar but it was extremely difficult to keep someone in the position,” she said. “So I realized I just needed to do this.”

She says she can’t tell if either presidential candidate would come through with much needed resources. But she is sure of one thing: the whole system needs a major overhaul.

“Unless you have been in this situation either caregiving or having your own health crises, I don’t think you really understand it,” Kelly said. “Be it in-home care or senior care, it needs fixing.” 

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