Family caregivers are seeking to make their plight a 2024 campaign issue after the COVID-19 pandemic exposed the lack of support for the more than 53 million people who provide unpaid care to parents, spouses, friends and children with disabilities.

Exhausted from shortages of workers who help care for people who need it and the rising costs of caregiving, advocates argue caregivers could become a powerful voting bloc in next year’s elections.

“The pandemic laid bare the fact that this country doesn’t have a caregiver infrastructure,” said Nicole Jorwic, chief of advocacy and campaigns for Caring Across Generations.

“This is an issue that the government can step in on because they have,” she said, referring to temporary funding Congress passed for child care and services that help older people and people with disabilities stay in their homes.

During the pandemic, Medicaid programs in many states also allowed payments to caregivers and Congress required certain employers to provide paid leave related to COVID-19.

While groups like Caring Across Generations and AARP have long pushed for politicians to support unpaid family caregivers, they are hoping the pandemic has brought more attention to the issue and demonstrated the need for a permanent solution from the federal government.

AARP, one of the most powerful advocacy groups in the United States, plans to frame the issue as an economic one that impacts millions of people providing unpaid care to parents, spouses and friends.

“It’s going to be one of the two issues AARP is going to ask everybody running for public office: ‘What’s your position on Social Security? And what’s your position on family caregiving?'” said Nancy LeaMond, AARP’s executive vice president and chief advocacy engagement officer. She called the caregiving issue “a gateway to a broader debate on long-term care.”

People typically become caregivers because of the lack of a long-term care structure in the United States. Medicare doesn’t pay for long-term care, and while people with Medicaid can qualify for some support, like stays in nursing homes and home- and community-based services, that doesn’t help millions of people who technically make too much money to qualify for the program.

That has left family members to step in, often at a moment’s notice after a fall or injury, with no real training or support from the government and health systems.

“Those costs are major costs. And that’s a lot of what we’re going to be doing in 2024 is showing the true costs of care,” Jorwic said. “There is a real cost of not addressing this problem to families everywhere.”

A 2020 AARP survey found that 23% of caregivers feel their duties have made their own health worse, while 38% said they are experiencing a moderate to high degree of financial strain from providing care.

The issue is particularly important to the so-called sandwich generation: adult children caring for their own kids while also providing support to parents who are aging or who have disabilities.

Advocates are pushing for a permanent structure that includes 12 weeks of paid leave, caregiver tax credits, child care affordability measures and the expansion of services that allow people with disabilities and older people to receive extra help in their homes and communities.

They also want increased wages and better benefits for direct care workers to attract more people to the field and reduce shortages that are burdening caregivers.

“We should see care platforms from every presidential contender,” Jorwic said.

Caregiving advocates saw a measure of success in 2020, when President Joe Biden ran in part on a platform of addressing the long-term care and caregiving crisis.

His administration released the first national strategy to support family caregivers last year, including actions that governments and the public and private sectors can take.

But Congress rejected most of Biden’s caregiving agenda, including policies that would have required 12 weeks of paid family and medical leave and expanded access to services that help people stay in their homes and communities.

Overall, politicians still don’t see the care crisis as one that must be urgently addressed, said Ai-jen Poo, president of the National Domestic Workers Alliance.

“We have to let our elected officials, our candidates know that they have to champion those solutions or there will be consequences,” Poo said. “Politicians still don’t see the care crisis as one that must be urgently addressed. That is the work of 2024 … there is not a kitchen table in America where people are not talking about care.”

In May, AARP released a survey that found that more than half of registered voters 18 and older believe it is extremely or very important to provide support to unpaid family caregivers.

The issue is likely to come up in some U.S. Senate races, including in Pennsylvania, where Democratic Sen. Bob Casey is up for reelection. Casey plans to make caregiving issues a part of his campaign platform, said his campaign manager Tiernan Donohue.

“It’s going to be an issue top of mind and one Sen. Casey is talking about on the campaign trail,” Donohue said. “As we’re moving through this cycle he is someone who will continue to make sure he holds folks accountable to answering how they’re going to support the caregiving economy.”

LeaMond said there’s bipartisan support for policies that help caregivers.

But that support begins to fall apart when costs are discussed.

“There’s progress on policy,” she said. “There just isn’t any progress on actually getting anything done.”

© 2023 CQ-Roll Call, Inc
Distributed by Tribune Content Agency, LLC

Read more stories like this one. Sign up for Disability Scoop's free email newsletter to get the latest developmental disability news sent straight to your inbox.