Connie Garner, a long-time Kennedy aide who worked on the CLASS Act and is now a private sector attorney who is still involved with disability policy, wants to see a more comprehensive solution — including providing better training and a career ladder for long-term care workers. But she’s still strongly supportive of what the Democrats are doing in the reconciliation bill. “It’s better care and better jobs,” she says. “But as a society, we’re just not good on this issue.”
CLASS was a voluntary program that would have helped reduce long-term care needs but wouldn’t pay for all of them. People could invest in a limited insurance policy that they could eventually use for home care — anything from building a wheelchair ramp in their home to helping pay for an aide. It wasn’t designed to be comprehensive. But it was something, and it was available for anyone who chose to participate. Its almost immediate collapse only underscored how difficult it is to get a grip on the issue. And the Democrats’ rapid surrender showed how tough they think this challenge is to solve.
The Casey-Dingell framework takes a different approach. It puts $150 billion into home- and community-based care for low-income Americans on Medicaid, or those who become low-income after struggling with the costs of such care or quitting a paying job to care for a relative with a condition such as dementia or other ailment that limits function, mobility or cognition. Medicaid has to cover nursing homes; home- and community-based care is an add on. All states have it, in some form or another, but they can and do limit it — hence the 800,000-person waiting list.
The emphasis on improving the workforce is a core part of the Casey-Dingell approach, and it’s something that hasn’t always gotten a lot of attention in the past.
“Those workers are extremely important for keeping people at home,” rather than in a nursing home, says former HHS Secretary Donna Shalala. “And that’s both cheaper and more in line with people’s wishes.”
Across American society the need will only grow. Despite the dip in life expectancy in the last couple of years because of either “deaths of despair” such as overdose and suicide, or the coronavirus, Americans are living longer than a generation ago. But they aren’t always living healthier — what gerontologists call a gap between the “life span” and the “health span.”
It’s estimated that about 70 percent of Americans will need long-term services and supports for three to five years, sometimes longer. An adult day program costs around $20,000 a year (and some closed during Covid, creating a cascade of other problems). Nursing homes cost more than $100,000 a year for a private room; neither Medicare nor most private health plans pay for them except for limited circumstances — although many families don’t realize that until the crisis has already hit. Relatively few Americans have long-term care insurance; years of mumbling, sometimes bipartisan, in Congress about fixing that sector have gone nowhere.
But because people don’t appreciate the lack of coverage, the cost or what family caregiving involves, there’s not more agitation for Congress to do more; there’s no real constituency fighting for change.
And given the cost, it’s no wonder that lawmakers look at the bill, cringe and largely stay silent. Think tanks and universities pump out reports on options and approaches, but by and large, they stagnate. Nursing homes themselves may push against community-based alternatives, which are less expensive and generally preferred by patients and families.
“The nursing home industry is very powerful in state legislatures,” says Nina Kohn, an expert on aging and law at both Yale and Syracuse. “It’s really state sponsored market-failure. You are propping up an industry that people don’t’ want to use.”
Meanwhile milestones come and go. “I remember when we said this would be solved before the Baby Boomers started turning 65,” Feder says. “That was 2011.”
Maybe, as Fulmer notes hopefully, government inaction will be eclipsed by private sector action. But there are skeptics.
“We don’t fix this because we just don’t care about old people,” says Lori Porter, who heads the National Association of Health Care Assistants, which make up much of the long-term care workforce in and out of nursing homes. “Old people don’t matter in this country. And they never have.”