Now past a mild case of COVID-19, 99-year-old Gladys LeBreton, of New Orleans, recalled her political battles from decades ago, squaring off against Joe Donchess, then the don of Louisiana’s nursing home industry in the State Capitol.
“We would sit across the table. All the things we were trying to get were exactly the things they didn’t want,” she said of the state’s nursing home lobby. “They want to do what they want to do.”
What drove LeBreton to press for reforms in the 1980s was the same fraught decision for which the coronavirus pandemic has added a deathly new layer of fear: She could no longer care at home for her since-deceased husband, longtime state legislator Edward LeBreton Jr., who had declined with Alzheimer’s.
“Nursing homes could hire anybody off the street, without any background checks, without any training, and put them in the nursing home to care for these very fragile, elderly people. That was a nightmare,” LeBreton said.
“It definitely didn’t take me too long to figure out in general in the early 1980s that nursing homes were pretty awful.”
LeBreton fought to stand up a state ombudsman’s office for long-term care facilities in Louisiana, to get observers inside them, field complaints and press improvements. The program, now under the Governor’s Office of Elderly Affairs, was mandated by Congress.
Today, with nursing homes accounting nationally for about a third of all reported COVID-19 deaths — and more than 40% in Louisiana — reform advocates are again looking to Washington.
The needs, they say, are immediate and long-term: Fast dollars to support training, pay and health benefits for home health aides, and wider access to those aides and equipment for the elderly and physically disabled who want to remain at home during the national emergency and rely on Medicaid to pay for it.
In Louisiana, as in LeBreton’s day, the nursing home industry remains a powerful political force, however, and support to broaden those home- and community-based options in the state remains elusive, even amid the pandemic.
Louisiana is an outlier when it comes to the share of federal Medicaid long-term care dollars that go to those less-expensive alternatives to nursing homes, according to a 2017 investigative series by The Advocate.
Nearly every other state has tried to shift taxpayer dollars toward stay-at-home options, which are widely preferred by the elderly as well as cheaper, according to an AARP survey.
Elsewhere, nursing homes receive over half of those Medicaid dollars, the report showed. But in Louisiana, where state lawmakers have taken pains to protect industry funding — and the industry in turn showers campaign money into legislators’ coffers — nursing homes get four of five long-term care dollars, according to recent testimony from AARP.
In Congress, advocates have been pushing for a 10% boost in the federal match for Medicaid, specifically to help the elderly and physically disabled stay in their homes during the COVID-19 crisis.
That could mean tens of millions of dollars in additional funds to support aides and begin to clear waiting lists for services, though the state would still need to opt in.
Led by Democrats, the plan would give states through June 2021 to increase rates for home health agencies, provide home health aides with sick and family leave and overtime, and expand funding to meet demand for at-home services and equipment.
For now, the measures are contained in the “Heroes Act,” the House Democrats’ $3 trillion offering for the next COVID-19 stimulus. Among that bill’s backers are U.S. Rep. Cedric Richmond, D-New Orleans, who said in a statement that he would welcome the expansion of home health care in Louisiana during the emergency.
But U.S. Sen. Bill Cassidy, a physician who has taken on a prominent role in the congressional response to the pandemic, said in a statement that he wasn’t interested in the Democrats’ bill, which contains a multitude of other items and which Senate Majority Leader Mitch McConnell has pronounced “dead on arrival.”
Whether attempts to expand home health care amid the pandemic gain traction in a stimulus bill that both parties will agree to isn’t quite clear.
Cassidy pointed to the SMART Act, a half-trillion dollar emergency backfill for state and local revenue losses, as “the type of targeted approach that should be taken in regard to further stimulus spending, unlike the House bill that is using the crisis to advance a socialist agenda.”
A Cassidy spokesman declined to specify how the act might expand home health care options during the pandemic.
With state approval, some of that emergency money could theoretically be diverted for at-home or community-based care, but the bill doesn’t specify it.
New Orleans developer Pres Kabacoff and David Marcello, executive director of Tulane University’s Public Law Center, have been lobbying for bipartisan congressional support to boost funding for at-home services.
“This is not a problem that is unique to red or blue states,” Marcello said.
“The COVID-19 pandemic makes a compelling case that for their own safety, people must stay at home. We know by the death toll in nursing homes that ‘stay at home’ is literally a matter of life and death. We’ve got an obligation to make it possible.”
In the meantime, the nursing home industry is pushing its own slate of stimulus needs.
Two leading industry groups issued a news release on Friday promoting the stories of residents who came down with COVID-19 and lived through it, while citing a massive price tag for testing residents and staff in an appeal for help.
U.S. Sen. John Kennedy, a member of the Senate Appropriations Committee, announced Friday that nearly $100 million — part of an earlier, $484 billion stimulus bill — was coming to Louisiana nursing homes for labor costs, equipment, expanded testing and other COVID-related expenses.
Each skilled nursing facility with six or more beds will get $50,000 plus $2,500 per bed, according to the Department of Health and Human Services.
That money follows previous stimulus measures that also have included some relief for families seeking help for the homebound elderly in Louisiana. Waivers allow them to receive payment as support workers during an emergency that has seen many home aides sidelined.
Advocates are also pushing to free up money for states to train new home health workers, touting it as a jobs act for the freshly unemployed, such as the thousands of laid-off New Orleans service workers.
At the State Capitol, the AARP’s Louisiana branch is gunning for money in next year’s budget — now being confected by the Legislature — to reduce a waiting list of more than 11,000 for “community choice” waivers. If granted, those would authorize a panoply of services, equipment and home modifications.
“There’s a time and a place for nursing home care. We certainly believe that. But if an individual wants to live at home and can with a little assistance, we feel like that’s what they should get,” said Andrew Muhl, advocacy director for AARP of Louisiana.
“Overwhelming evidence shows people want to stay in their homes and age in place,” he added. “The point is, these are cost-effective solutions.”
Muhl noted the “special challenges” that have plagued nursing homes and assisted living facilities in the pandemic, in testimony he submitted last week urging the Legislature to shrink the waiting list.
Muhl said the ratio of long-term care Medicaid dollars that goes to nursing homes in Louisiana has actually risen in recent years because lawmakers have locked in rate protections for the industry. In other words, already an outlier, Louisiana is becoming more of one.
Former state Sen. Conrad Appel, R-Metairie, recalled legislation he sponsored in 2018 that aimed to move some of the Medicaid population in nursing homes to home health care under a managed care model.
The Louisiana Nursing Home Association argued it would result in a reduction in the quality of care.
Appel called it a “double bonus,” saying the state could save $100 million while increasing options.
“I am an extremely conservative Republican, and here is the AARP, the most liberal people, and I’m fighting like crazy to help them, because it’s right,” Appel said. “When I went to committee it was a done deal. We had no chance.”
Appel called the situation now, amid the COVID epidemic, “really a tragedy brought on by politics.” Aging Louisianians, he said, have been forced “into a situation that they could become infected, or at the very least they’re probably scared out of their wits.”
A few experts noted one number so far missing from the equation: How many people have died of COVID-19 while receiving at-home care. Such data may be harder to track because home care is by definition decentralized.
In the meantime, the ombudsman program that LeBreton helped start goes on today, with regional staffers and volunteers visiting nursing homes and fielding complaints.
The COVID-19 pandemic has highlighted trouble spots, including lax reporting of deaths to state officials by some nursing homes, said Tanya Hayes, coordinator of the ombudsman program for the New Orleans region.
She said staffing shortages also are a problem, and there have been calls over some draconian measures some homes have employed to contain the virus’s spread.
“Some facilities — not all, a couple — have barricaded the doors to prevent people from wandering out of their rooms,” she said. “Those are things we’re addressing immediately because of the safety risk if there’s a fire.”
At the same time, Hayes said she’s seen nursing home staffers perform heroically, with some administrators stepping into shifts as aides.
LeBreton, whose husband died in 1984, these days is a resident of Lambeth House, the New Orleans retirement home where the state’s first coronavirus cluster arose. The death toll at Lambeth House and at the St. Anna’s nursing home within its walls stood unofficially at 23 this week.
“My own opinion is that staying home more or less by yourself is about the worst thing you can do, because you’re isolated and you’re not well,” she said.
LeBreton left the complex a day before it went on lockdown two months ago for her daughter’s home. She contracted a mild case of COVID-19 — “I don’t know where I got it. I haven’t a clue,” she said — but has since been cleared.
Her political days are behind her, but with things opening back up, LeBreton was faced with her own tricky decision: When to go back. Neighbors stuck inside were having a “pretty rough time,” she said.
“I want it to go back to being sort of normal,” she said, “whatever that is.”
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