The aging of the US population is one of the big, quiet stories of the coming decades. By 2040, the US Census projects that the number of Americans 85 or older will more than double to 14.6 million, while the 65+ population will rise nearly 60 percent to 82.3 million.
Many older people will develop disabilities that mean they need help with daily tasks like dressing and bathing. The US Bureau of Labor Statistics expects jobs for home care workers who provide this kind of support to rise from around 2.5 million now to nearly 3.5 million by 2024. But many policy experts say it’s going to be hard to find workers to fill all those jobs.
One way to make sure that aging Americans get the care they need is transforming friends and family into paid caregivers. That’s the idea behind participant-directed, or self-directed, home care. Instead of hiring home care agencies to send workers to clients’ homes, programs like Medicaid can pay friends or family members hired by clients themselves.
Recently, a team of researchers from Boston College looked at a group of disabled veterans who switched from getting care through an agency to a participant-directed program. They found that when veterans chose to hire a trusted niece or friend (or hired a spouse or adult child who was already helping them out for free), it decreased stress by providing an extra source of cash for the household and offering a more comfortable solution than having a stranger in the house.
“Now I don’t have to work out of the home just to make a living,” the spouse of one of the veterans in the program told the researchers. “I can be at home, take care of him. And it helps make ends meet.”
The participant-directed model got its start in the 1970s, when non-elderly people with disabilities began pushing for more control over their own care. In the decades that followed, state Medicaid agencies and other health benefits administrators started experimenting with allowing recipients of government benefits, including older people with disabilities, to choose their own caregivers. These programs take a variety of forms, but, in general, they mean the people getting care essentially hire own home care aides, while the agencies pay for the services and take care of things like collecting timesheets and withholding taxes. Sometimes, they also offer training programs for the care workers.
In the 1980s, only six states had any kind of participant-directed care program. Today, every state does, and they provide care to about a million people. But the numbers vary tremendously from state to state. In California, where participant-directed services are the state’s main home care system, 127 of every 1,000 adults with disabilities received care this way in 2013, according to AARP data. In half the other states, fewer than eight did.
Susan Reinhard, senior vice president of AARP’s Public Policy Institute, says rigorous studies have proved the safety and value of participant direction, but expanding their use depends on state Medicaid agencies and other benefits administrators implementing and publicizing the systems well. “I can’t say it’s taken off for everybody by any means,” she says. “It’s been small but steady growth.”
In particular, she says, private managed care companies that some state agencies have hired to administer Medicaid benefits prefer not to bother with participant-directed systems. Setting up the programs requires educating clients about their options, creating systems to pay the caregivers they hire, and monitoring the caregivers—sometimes including doing background checks required by state law, Reinhard says. It’s all burdensome, and companies often find it’s not worth putting energy into—unless of course it’s a part of state policy, and they have no choice.
As the need for qualified home care workers becomes more acute, though, participant direction may gain momentum. “In a world where we have a shortage of caregivers, this is a terrific way to increase your caregiver pool,” says Merle Edwards-Orr, a senior consultant at the National Resources Center for Participant-Directed Services. “You’ve got folks who say ‘I don’t want to be a caregiver—that’s not what I want to do for a living—but if I can get paid so I can keep a roof over my head, I’m happy to care for Uncle Frank.’”
In California, researchers have found that caregivers who are related to the people they care for have lower turnover rates and provide higher-quality care than unrelated providers. Other countries have also seen success with participant-directed home care. In England, one assessment found 79% of people who hired their own personal care assistant were satisfied with the care they received, compared with 26% among those using the traditional model. In Germany, the government pays covers a significantly lower portion of the costs of participant-directed care than it pays out for traditional care—and yet 80% of those requiring home care in the country still choose that option.
Logistical difficulties aside, the idea of paying an aunt or neighbor, rather than a stranger, to take care of someone in need is relatively straightforward. But participant-directed care might seem a bit odd in the cases where, practically, it means the government is paying someone to take care of their aging father or wife. After all, this is work that people—particularly women—have long done for free.
Robert Newcomer, who studies home care at the University of California, San Francisco, says agencies have created restrictions so that they don’t pay household members to shop for groceries or do other household tasks that they would have done anyway. Even so, he says, some people raise concerns. “More cautious people do worry that it’s somewhat of an income redistribution program for some of these families,” he says. “But the reality is this is a lot of work. And if you really want to keep people living in the community, you’ve got to find a way to do that.”
In a sense, paying people to care for aging relatives is comparable to expanding tax credits for families with young children. Both Donald Trump and Hillary Clinton have proposed plans that would provide extra money to some families that they could use either to pay for child care or subsidize a parent’s ability to stay home with the kids.
As technology continues to replace humans in factories and behind the wheels of taxis, the nature of work is changing. More and more, the work that our society needs done, from nursing to social work to teaching preschool, blur the lines between paid job and labor of love. To some futurists, the end game here is that we all get paid simply to exist through a universal basic income scheme, and then spend more time caring for each other just because we actually care.
That kind of utopia, though, is not yet in the offing. And participant-directed services aren’t for everyone. Plenty of people would rather have a stranger assist them in the bathroom than ask their daughter to do it. Edwards-Orr says it’s important that any system provide as many options as possible. But, he says, for some family members, it feels better not have to leave the house to make money while someone else gets paid to be a caregiver.
“It seems kind of silly,” he says. “I go to work and I have to find someone else to care for my loved one? Why not eliminate the middleman?”