On the eve of the first votes of the 2016 presidential contest – a wacky year where outsized personalities and voter anger are grabbing the headlines – there’s at least one familiar political pattern: nary a mention of one of the most critical issues facing many American families: long-term care.
“Unless something dramatic happens to cause people to pay attention, I don’t see it affecting this election or the next administration,” says Carol Levine, a national advocate for the 40 million unpaid family caregivers and director of the United Hospital Fund’s Families and Health Care Project, which develops partnerships between the health care community and family caregivers.
We’ve Seen This Before
Just before the 2008 elections, David Stevenson, then an assistant professor at Harvard Medical School, wrote in the New England Journal of Medicine that long-term care “has all the makings of a great campaign issue” because “it affects a large portion of the population, is expensive and requires a unique partnership between government and citizen.” Yet, he noted, candidates in that year’s presidential race had also been “virtually silent” about long-term care policy.
Because most Americans don’t anticipate needing long-term care – until they do need it – there are only three options when the crisis hits: rely on unpaid (family) caregiving; pay for home care or nursing home care; or tap into federal and state Medicaid programs that require people to spend down most of their assets in exchange for receiving government-funded services. Nursing home care now costs, on average, $80,300 per year for a semi-private room; a home health aide working 44 hours a week – just over six hours a day – costs $45,760.
“Candidates are crazy not to mention it because it is what most families are dealing with,” says veteran ABC News and NPR political commentator Cokie Roberts. “Fully a third of households in America are taking care of an elderly or disabled member.”
The politicians get it on a personal level, but not on a big picture level.
— Carol Levine, caregiver advocate
A ‘Critical’ Issue
Roberts sounded a similar note soon after the first-term election of Barack Obama in a syndicated newspaper column that she writes with her husband, journalist Steve Roberts: “It will be hard for the new administration to address the needs of the country’s caretakers, but it is critical for the incoming president to do so.”
Congress did incorporate a long-term care program into the 2010 Affordable Care Act. Called the Community Living Assistance Services and Supports Act, or CLASS Act, it was designed as a voluntary national insurance program paid for by workers who would receive long-term care benefits at home when they needed them. But a year later, the administration deemed it unworkable and abandoned it.
Kathleen Sebelius, then secretary of Health and Human Services, warned that “by 2020, we know an estimated 15 million Americans will need some kind of long-term care and fewer than 3 percent have a long-term care [insurance] policy.” The percentage has risen slightly, but cost still puts long-term care insurance out of reach for most Americans.
As 78 million baby boomers age – the oldest are now entering their 70s – with many of them caring for family members or adding to the population that needs care, and many lacking an affordable solution, you would think pressure would grow on politicians to speak out and act. But don’t hold your breath. Long-term care remains largely invisible in the presidential debates, though Hillary Clinton, for one, has made it a part of her stump speech in the early voting states and it comes up in daytime political events at retirement homes.
No Roadmap for Coming Change
In January, the New England Journal of Medicine predicted that based on the lack of campaign dialogue the issue is getting so far, “it seems far-fetched to believe that long-term care will become a front-burner issue” in 2016. The journal warns that “a major societal challenge looms without a policy roadmap to guide it.”
“I’m not sure the voting public sees the issue of long-term care as a fundamental political or policy issue right now,” says John Hishta, vice president of campaigns at AARP, “because there aren’t that many solutions out there.” AARP’s major campaign push is to encourage the candidates to take a stand on Social Security, but Hishta says AARP is focusing on caregiving in the gubernatorial races because “it’s more effective as a statewide issue.”
For family caregivers, there’s frustration in seeing retirement security taken on as a public policy matter for Congress and the White House to debate, while long-term care remains largely a family issue out of public view.
Need for Leadership
“The politicians get it on a personal level, but not on a big picture level,” says Levine, a MacArthur “genius grant” recipient who emerged as a national voice for caregivers while caring for her husband for 17 years after a horrific car accident. “The groundwork has been laid. There’s been enough analysis and talk, but it needs a towering figure to say, ‘OK folks, we know what we need to do and now we’re going to do it.'” Otherwise, she says, “families will continue to collapse under the strain.”
As Levine sees it, stress on family caregivers is both a result and a cause of long-term care’s absence on the campaign trail. Politicians aren’t addressing the issue because it isn’t bubbling up from the grassroots.
“While you’re a caregiver, it’s hard enough to be an advocate for the person you’re caring for and maybe yourself,” she says. “It’s even harder to be involved on a movement level. And when the caregiving ends – in whatever way it does – then you want to move on to something you put aside for all those years and not take this on.”
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