Biden’s proposal is the most wide-ranging care policy ever proposed by a major party’s presidential nominee, according to experts.
Imagine waking up, helping your elderly parent bathe and get dressed, driving them to doctor’s appointments, and making sure they take their medication, all while holding down a job or raising a family, with little to no help from the U.S. government.
For tens of millions of family caregivers who find themselves ignored by large swaths of U.S. government and society, this isn’t an exercise in hypotheticals. It’s their daily reality.
Family caregivers play a critical role in America. They provide help to many of the 54 million people aged 65 and older who can’t take care of themselves. But as they step into these roles, they’re often surprised to discover how little help there is from the government.
Medicare, which provides insurance for seniors, does not cover in-home services and offers very limited care for long-term illnesses or diseases, despite what many Americans think.
The United States is also one of only two developed countries in the world without a public insurance program for long-term care. Private long-term care plans can cost several thousand dollars per year for decades, putting them out of reach for most Americans. Paying out of pocket for long-term care is even more costly—the price tag for full-time home care can surpass $50,000 per year, while a private room in a nursing home can run upwards of $100,000 a year, according to the AARP.
Medicaid covers costs for some of the very poor and disabled, but experts say the vast majority of middle- and working-class Americans are left without any options. That leaves family caregivers to take on the bulk of the responsibility—and there are many of them.
According to a May report from the AARP and National Alliance for Caregiving, roughly 53 million American adults have provided care to an adult or child family member with special needs at some time in the past year.
In many cases, these caregivers are forced to quit their jobs and upend their lives to care for their loved ones. The work of care is so difficult and there are so few resources out there for caregivers that they often feel invisible and isolated from the rest of society.
In some cases, family caregivers juggle the load with professional home care workers, who are disproportionately women of color and are often paid poverty wages and receive few protections and benefits. An estimated 2 million people are employed as home care workers.
The lack of a comprehensive long-term care system in the United States has created a care crisis that has harmed both caregivers and aging Americans, and it’s one that will only grow more dire. By the mid-2030s, the number of Americans over 65 will increase to 78 million and will outnumber children under 18 for the first time in the country’s history, according to Census projections. Studies estimate that more than half of older Americans will eventually require long-term care, with the average lifetime long-term care costs for Americans over age 65 reaching $138,000, according to a 2016 study by the Urban Institute.
The scope of the issue has only been matched by elected officials’ unwillingness to take action to address it. That may finally be changing, though.
Biden’s Caregiver Plan Is ‘The First of Its Kind’ for a Major Party
Last month, Democratic presidential nominee Joe Biden released a $775 billion plan to help working parents and caregivers.
In his proposal directed at caregivers, the former vice president aims to eliminate the 800,000-person waiting list for home and community care under Medicaid; provide additional funding to states and organizations that explore community- and home-based alternatives to institutional care; and hire 150,000 new community health workers to help patients manage their medical issues.
Biden has been a single parent, taken care of his aging parents, and helped his own son, Beau, navigate brain cancer before it ultimately claimed his life. In introducing his plan, he spoke candidly about how challenging those periods were. He also acknowledged how fortunate he was to be able to rely on his family for help with both financial support and care—resources that many other Americans can’t count on.
“We know what it’s like,” Biden said during his July speech. “We know so many of you are going through the same thing without the kind of help I had.”
“Families are squeezed emotionally and financially. They need help, but too often they can’t afford it,” he said. “And the professional caregivers out there—the home healthcare workers, the childcare workers—are more often women of color and immigrants [and] are too often underpaid, unseen, and undervalued.”
While Biden’s plan does not address all the issues with the nation’s long-term care system, experts say it represents the most wide-ranging care policy ever proposed by a major party’s presidential nominee.
“It’s meaningful that this plan is the first of its kind that we’ve seen from a presidential candidate in modern time,” said Janet Kim, communications director at Caring Across Generations, an organization dedicated to transforming the nation’s long-term care system.
Howard Gleckman, a senior fellow at the Urban Institute, agreed. “I think it goes a long way towards acknowledging the problem, which is a really important step because presidential candidates and many other politicians at the national level have not really done that.”
Here’s a closer look at Biden’s plan.
The caregiver plan increases funding for home and community-based care.
Hundreds of thousands of people are currently waiting to receive home and community care under Medicaid, which covers medical costs and provides care for poor and disabled Americans. It can take up to five years for some people to get the services they need. To end that waitlist, Biden wants to increase Medicaid funding to states and territories. Doing so would ensure more people can receive at least some long-term services and support they need at home or in the community, rather than having to go to a nursing home.
Biden would also establish a fund to expand efforts such as day programs and respite care that would allow unpaid caregivers to work.
A successful makeup artist, Randall put her career on hold and uprooted her life in Charlotte, North Carolina, to move to Henderson, a small, rural town about 40 minutes north of Raleigh, to help her father. Randall’s father is a veteran and worked in the education system—meaning, he has a retirement plan—but he’s not wealthy enough to afford full-time home care and he’s not poor enough to qualify for Medicaid, which would cover many of his long-term care needs.
Joy Randall, 39, has spent the past two years taking care of her elderly father who suffers from complications related to diabetes, including glaucoma, which has blinded him; a partial amputation of his foot; and kidney failure, for which he needs dialysis.
This is where an easy-to-use, low-cost, or free respite program would come in handy.
“It definitely would be useful,” Randall said. “I still struggle with just kind of leaving him at home. I mean I have a little bit of help, but there’s not somebody who’s in the home 24 hours like I am, and so you know he’s there by himself.”
Randall has recently returned to work part-time at a spa, but still wishes she could return to the workforce full time.
Biden wants to hire 150,000 new community health workers.
Biden wants to dramatically increase the nation’s community health workforce, which consists of frontline health care workers who live among the communities they serve, provide patients support and resources to help them better manage their own health, and operate as a liaison between the community and health care, government, and social service systems.
Several studies have shown that investing in community-based health care and health workers can lead to better treatment of chronic diseases, improve the mental health of the patients, and significantly reduce hospitalizations and medical costs.
Gleckman said these workers could do a great deal to help keep people who live in underserved communities healthy.
“These are the folks who often are getting their care in the emergency department of hospitals which is really expensive, so community health workers who are well-trained and well-deployed really can help,” he said.
Expanded community health programs would also improve the lives of informal caregivers like Randall’s by making the nation’s complicated care system easier to navigate, according to Kim.
“My sense is community health workers can play a vital role in our overall caregiving infrastructure in assisting and supporting families before the point of needing acute or medical care,” she said. “This could translate into a less stressful user experience and greater empowerment and ease in navigating the system.”
How would Biden’s plan help workers?
Expanding the workforce would also create a huge number of jobs, though Kim noted it was essential to also raise wages, improve working conditions, and create more opportunities to make it easier to recruit and keep workers.
Biden seems to recognize the necessity of increasing wages as well, as his plan mentions developing a career ladder and setting standards for pay for home care workers in conjunction with public funding of programs. He also wants to guarantee them health care through their jobs or his proposed public option insurance program. Federally provided paid family leave, medical leave for up to 12 weeks, seven days of paid sick leave, and affordable child care for their own children would also be included for caregivers under Biden’s plan.
The former vice president would provide domestic workers with stronger legal protections by giving them the chance to join a union, which would allow them to collectively bargain and negotiate better benefits and pay.
“We know that when collective bargaining is possible, it’s one of the most powerful ways that people can fight for higher wages and better working conditions,” Kim said.
Financial credits for informal caregivers would help soften the burden under a Biden-Harris administration.
Biden’s plan also builds on a previous proposal to support informal caregivers like Randall, which would include a $5,000 tax credit and Social Security credits, to ease the financial burden of caregiving for a family member.
Many caregivers, however, give up their jobs or reduce their hours, drastically cutting their incomes, which minimizes the benefit of tax credits. “Once you don’t owe any taxes, a credit doesn’t do you any good,” Gleckman said. It would certainly benefit those people who are middle-income, he noted, but said it represented just a drop in the bucket of long-term care costs that caregivers accrue.
A 2016 AARP report found that 78% of caregivers incur out-of-pocket costs as a result of caregiving, and on average, spent nearly $7,000 on out-of-pocket costs related to caregiving.
Gleckman was more supportive of the Social Security credits, which would allow informal caregivers to accrue Social Security benefits during the time they spend caregiving, even if they had to quit their job or reduce their hours.
“The idea that we would recognize that being a family caregiver is work could be very beneficial to that caregiver,” he said. Gleckman did note, however, that the Social Security Trust Fund is already on track to run out of money within the next 15 years, and any plan to provide credits would need to include a proposal for how to fund it.
What else needs to be done?
Although the plans Biden proposes go a long way in beginning to address the country’s caregiving crisis, experts and caregivers say there need to be more sweeping changes, including addressing Medicaid’s bias toward institutional care and creating a sustainable long-term public care system.
Randall, the North Carolina caregiver, wants Biden to provide more help for people like her and her family who aren’t poor, but also can’t afford the exorbitant costs of long-term care.
“We’re in that forgotten middle that my father makes too much to qualify for Medicaid,” she said. “We are genuinely middle class, and unless you’re poor, a lot of these things just don’t apply to you.”
Still, that a major party’s presidential nominee has released a proposal dedicated to caregivers is noteworthy and represents a shift in discourse in the United States.
“We’re realizing how care is essential not only for our families, but it’s essential to our economy and it’s past time that we’ve come to acknowledge the value of care and caregiving support,” Kim said. “We need to make permanent investments in our care infrastructure to support families, to fight back against racial and economic inequality, but also to prepare for an aging nation which we know is right around the corner.”