That wonky-sounding term describes a variety of programs for seniors and people with disabilities who need help with daily tasks, so that they can stay out of large institutions. It can mean anything from an agency that finds employment for somebody with severe mental impairment to a home care aide that allows a 90-year-old grandmother who uses a wheelchair to remain in her own apartment.
These services are expensive and frequently hard to find, with quality that is inconsistent at best. Democrats in Washington say they want to change that and probably none has made that case more loudly than Debbie Dingell, the House Democrat from Michigan.
Along with her collaborator in the Senate, Pennsylvania Democrat Bob Casey, Dingell is the chief co-sponsor of legislation that would dramatically increase government funding for HCBS. The idea is to help both the people who get the services and those who provide them, on the theory that the well-being of both are intertwined.
The concept has lots of support already. The American Jobs Plan, which President Joe Biden introduced in March, called for a substantial boost in HCBS funding. If all goes according to advocates’ plan, a version of the Dingell-Casey proposal will be part of the sprawling spending bill that Democrats intend to pass later this year.
But HCBS is competing for resources with a variety of other popular, expensive initiatives. And in the Senate, where leaders from the Democratic caucus are trying to fit everything into a $3.5 trillion package that can get the 50 votes it needs to pass, HCBS is among the causes that might get a lot less money than advocates once hoped.
Instead of the $400 billion in new spending that Biden requested and that experts say it would take to fund the Dingell-Casey bill fully, Senate negotiators are talking about reducing that substantially ― maybe by more than half, to less than $200 billion, according to multiple sources privy to discussions.
Whether that spending number comes back up and by how much will depend in part on the ability of the proposal’s champions to make a case for it. A handful of key lawmakers are in a position to do that because they can talk about loved ones who have needed the sort of support that HCBS provides. Dingell happens to be one of them.
What Debbie Dingell Learned From John
Dingell has been in and around politics for most of her adult life, going back to the three decades when she held a series of positions in the government affairs and philanthropic arms of General Motors.
During that time, Dingell said in a recent interview with HuffPost, she would hear frequently about the difficulty people had when a disabled or elderly family member needed ongoing assistance with either medical needs or simpler, daily tasks of living ― what’s known in the policy world as “long-term care.” The problems always seemed most acute when they were looking for the kinds of services necessary to live at home or stay in the workforce.
But, Dingell said, she didn’t fully grasp why the situation was difficult until she had to arrange care for her husband, former Democratic Rep. John Dingell, while he was still alive. In late 2014, he was hospitalized for a hip injury and serious heart problems, checking into George Washington University Hospital literally hours after casting the last vote of his nearly six-decade career in the House.
“I’d wonder, how the hell do I get somebody to pay attention to me? And look, I am a member of Congress, so you can imagine what it’s like for others.”
Although he recovered, he was 88 needed somebody to be at home with him back in Dearborn, outside Detroit ― especially now that Debbie Dingell, who had won election for his seat that November, would be spending so much of her time in Washington.
That’s when she confronted the reality about long-term care that few Americans recognize until they or somebody they know needs it: Medicare, the federal health insurance program for the elderly and people with disabilities, pays for at most 100 days of certain services — and, even then, only under some circumstances. Most private insurance covers less.
Beyond that, the biggest source of payment for long-term care is Medicaid, the federal-state government insurance program for low-income Americans. It will cover the costs of long-term care but only for people whose income and wealth falls within a complex set of eligibility guidelines. And although Medicaid generally pays for nursing home care, it pays for non-institutional support and services in more limited, sporadic ways that depend individual states’ rules and what is ultimately a limited pot of money.
Dingell said she spent many hours on the phone simply trying to figure out which coverage would pay for what and when. “You don’t understand it until you actually have to navigate the system,” Dingell said, remembering one day when she documented 14 different phone calls to Medicare and to private insurance, many of which she spent pushing buttons trying to get past automated prompts in order to speak with a live human.
“I was in this battle over who’s responsible, Medicare or private insurance, and I would just hit my head against the wall, and I’d wonder, how the hell do I get somebody to pay attention to me,” she said. “And look, I am a member of Congress, so you can imagine what it’s like for others.”
Even after she had figured out the financing, Dingell said, it was a challenge finding workers that both she and her husband trusted. She succeeded, eventually hiring a woman named Christine Thomas who worked for them until John died in 2019, and with whom Debbie Dingell remains close to this day. But, Dingell said, she was lucky because she happened to find Thomas through a friend and because the Dingells, unlike so many Americans, were able to pay out of their own pockets.
One other way the Dingells were lucky is that John’s needs were relatively modest. He had a scooter but he was capable of walking, and he maintained his mental acuity until the end. It was only in the final weeks that he needed help with showering, using the bathroom, and other intimate daily tasks.
“He was stubborn and proud,” Dingell said of her late husband, who in addition to having the longest congressional tenure in history also fought in World War II. “But he couldn’t be alone anymore.”
“It’s hard, because it’s such a skill to know how to do that, and to treat people with respect,” Dingell said of Thomas and some of the other home care workers they employed. “For us, those really bad days were only at the very end, the last few weeks. But for lots of other people it’s much longer than that, and they’re just wondering, what do I do? How do I deal with this? How do I pay for this?”
What Dingell And The Democrats Want To Do Now
A big reason home- and community-based care hasn’t gotten better government funding is that it was something of an afterthought when Congress passed the law creating Medicaid in 1965. Back then, the focus was all on institutional care. The assumption was that, once you couldn’t live on your own, you’d go into a nursing home or some other kind of congregant setting.
Over the years, with the growing realization that more of the elderly and people with disabilities could stay at home or have steady jobs, Congress provided new funds for HCBS. But rather than make HCBS a “mandatory” part of the Medicaid benefit, with the kind of unlimited funds that nursing home care gets, Congress made it “optional,” which gave states more leeway over how to use the funds.
It also meant the money would run out if demand exceeded the allotment, which is precisely what has happened. Today, more than 800,000 Americans are on waiting lists for HCBS. Experts believe the real unmet demand is even higher, because it can take many years to get off the lists and hundreds of thousands don’t even bother signing up.
The funding levels have also limited what states can pay providers, which in turn helps explain why the median salary for home health and personal care aides is around $13 an hour, according to the Bureau of Labor Statistics.
That level of pay makes it hard for agencies and individual families to hire and hold onto qualified caregivers. It also makes it hard for the caregivers simply to make a living. As of 2018, 17% of home care workers were living below the poverty line and nearly half within 200% of it, according to the research and advocacy organization PHI.
To provide for themselves and their families, many home care workers have multiple jobs, working long hours for six or seven days a week ― a pace that strains the abilities of even the most dedicated, most skilled workers. It also creates more opportunities to spread infections, as the COVID-19 pandemic made clear.
Under the Dingell-Casey proposal, states could get extra HCBS money from the federal government if they agree to a series of conditions, like promising to pay for a variety of personal care and behavioral health services many states do not cover now, as well as developing and then monitoring various measures of quality. States would have to hit benchmarks, like showing progress at reducing those wait lists, and they would have to raise worker pay ― and do so in ways that actually put more money in the pockets of caregivers, rather than simply padding revenues for agencies.
Like any such proposal, the Dingell-Casey HCBS model comes with trade-offs, questions and critics. There is, for example, a long history of efforts at improving health care quality failing or even backfiring. Conservatives, like those at the Wall Street Journal editorial page, have said the proposal is more about rewarding the Service Employees International Union, which represents direct care workers and generally supports Democrats, than improving public policy.
Even the most enthusiastic champions of the proposal acknowledge it’s not enough to put HCBS on a truly equal footing with institutional care, which is their long-term goal. Nor would it likely do much fix the complex bureaucracy that has frustrated so many Americans, just as it frustrated Dingell.
And yet, the dollars alone could make a huge difference. The $400 billion increase would work out to about a one-third bump in Medicaid funding for HCBS, according to an analysis by the Henry J. Kaiser Family Foundation. Advocates believe that could come close to wiping out the waiting lists, while boosting caregiver compensation enough to attract more and better trained workers.
“One reason it’s been so hard to shift away from institutional care is that there has not been the capacity to provide something else,” Nicole Jorwic, senior director of public policy at The Arc, an advocacy group for people with intellectual and developmental disabilities, told HuffPost. “This proposal will create the HCBS capacity that’s needed.”
How Dingell And Allies Are Making Their Case
Of course, that all assumes Congress votes for the $400 billion increase, which is very much in doubt right now. Even going through the “budget reconciliation” process, in which Republicans won’t be able to block legislation with filibusters, Democrats will need yes votes from all 50 members of their caucus in the Senate and practically all of their House members in order to pass the big spending package.
Partly leaders have settled on a figure of $3.5 trillion over 10 years as something they think they can get through the process. But even if it works, cramming their entire agenda into that figure will force lawmakers to scale back many, possibly most, of the initiatives under discussion.
“Literally everybody is taking a haircut,” a senior Democratic aide on Capitol Hill working on these issues told HuffPost. “And where we are anxious is to see where that haircut ends up. Are we going to get a buzz cut or are we going to be able to have some bangs?”
But advocates might be able to make a difference, perhaps by invoking their own stories. In addition to Dingell, one of the most visible HCBS supporters on Capitol Hill has been Maggie Hassan, the Democratic senator from New Hampshire and a co-sponsor of the Dingell-Casey proposal.
A longtime advocate for the rights of people with disabilities, going back to her days as a hospital lawyer and then as governor, Hassan has talked frequently about her son with cerebral palsy and the role caregivers have played in their lives ― both by helping him and making it possible for Hassan to continue pursuing her own professional interests.
“If you are a parent and you need to work and you can’t find an after-school program or weekend activity for your child that allows you to keep your schedule for work, that’s a real financial challenge to the family,” she told The Atlantic in 2015, when she was first running for the Senate.
This too is a big part of the HCBS pitch, and one reason advocates say they can justify the government spending so much money on it. When the elderly and people with disabilities have enough support, family members are freer to work outside the home if that’s their preference. (Alternatively, many states allow family caregivers to draw salaries; the HCBS initiative would make that easier, as well.)
Whether that message is getting across is unclear. But the overall concept of a big government initiative to improve home care is highly popular, according to available polling, and makes sense even to many self-identified Republicans ― among them, Christine Thomas, the caregiver who was with John Dingell all of those years.
She told HuffPost that he liked the fact that her politics were different from his, and enjoyed debating with her. She also said she fully supports the Dingell proposal, even though she knows it means a lot of extra government spending, because caregiving is so important and most families, unlike the Dingells, simply don’t have the resources to pay for it.
“Not everybody has the luxury Deborah has, to hire somebody reliable,” Thomas said. “I really think that if we can get some more money into these programs, it’s going to benefit so many people.”