Federal law requires Medicare to pay indefinitely for home care
Colin Campbell needs help dressing, bathing and moving between his bed and his wheelchair. He has a feeding tube because his partially paralyzed tongue makes swallowing “almost impossible,” he said. He has Medicare.
Colin Campbell at his home in Covina, Calif., on Dec. 18, 2017. Campbell was diagnosed with ALS eight years ago. He has Medicare due to his disability but can’t use it for home care and instead is paying $4,000 a month for that service. His adjustable wheelchair allows him to recline, which makes breathing easier. (Heidi de Marco/KHN)
Campbell, 58, spends $4,000 a month on home health care services so he can continue to live in his home just outside Los Angeles. Eight years ago, he was diagnosed with amyotrophic lateral sclerosis, or “Lou Gehrig’s disease,” which relentlessly attacks the nerve cells in his brain and spinal cord and has no cure.
The former computer systems manager has Medicare coverage because of his disability, but no fewer than 14 home health care providers have told him he can’t use it to pay for their services.
That’s an incorrect but common belief. Medicare does cover home care services for patients who qualify, but incentives intended to combat fraud and reward high quality care are driving some home health agencies to avoid taking on long-term patients such as Campbell, who have debilitating conditions that won’t get better, according to advocates for seniors and the home care industry. Rule changes that took effect this month could make the problem worse.
“We feel Medicare coverage laws are not being enforced and people are not getting the care that they need in order to stay in their homes,” said Kathleen Holt, an attorney and associate director of the Center for Medicare Advocacy, a nonprofit, nonpartisan law firm. The group is considering legal action against the government.
Federal law requires Medicare to pay indefinitely for home care — with no copayments or deductibles — if a doctor ordered it and patients can leave home only with great difficulty. They must need intermittent nursing, physical therapy or other skilled care that only a trained professional can provide. They do not need to show improvement. Those who qualify can also receive an aide’s help with dressing, bathing and other daily activities. The combined services are limited to 35 hours a week.
Medicare affirmed this policy in 2013 when it settled a key lawsuit brought by the Center for Medicare Advocacy and Vermont Legal Aid. In that case, the government agreed that Medicare covers skilled nursing and therapy services — including those delivered at home —to maintain a patient’s abilities or to prevent or slow decline. It also agreed to inform providers, bill auditors and others that a patient’s improvement is not a condition for coverage.
Campbell said some home health care agencies told him Medicare would pay only for rehabilitation, “with the idea of getting you better and then leaving,” he said. They told him that Medicare would not pay them if he didn’t improve, he said. Other agencies told him Medicare simply did not cover home health care.
Securing Medicare coverage for home health services requires persistence, said John Gillespie, whose mother has gone through five home care agencies since she was diagnosed with ALS in 2014. He successfully appealed Medicare’s decision denying coverage, and afterward Medicare paid for his mother’s visiting nurse as well as speech and physical therapy.
“You have to have a good doctor and people who will help fight for you to get the right company,” said Gillespie, of Orlando, Fla. “Do not take no for an answer.”
Yet a Medicare official did not acknowledge any access problems. “A patient can continue to receive Medicare home health services as long as he/she remains eligible for the benefit,” said spokesman Johnathan Monroe.
But a leading industry group contends that Medicare’s home health care policies are often misconstrued. “One of the myths in Medicare is that chronically ill individuals are not qualified for coverage,” said William Dombi, president of the National Association for Home Care and Hospice, which represents nearly half of the nation’s 12,000 home care providers.
Part of the problem is that some agencies fear they won’t be paid if they take on patients who need their services for a long time, Dombi said. Such cases can attract the attention of Medicare auditors who can deny payments if they believe the patient is not eligible or they suspect billing fraud. Rather than risk not getting paid, some home health agencies “stay under the radar” by taking on fewer Medicare patients who need long-term care, Dombi said.
And they may have a good reason to be concerned. Medicare officials have found that about a third of the agency’s payments to home health companies in the fiscal year ending last September were improper.
Shortages of home health aides in some areas might also lead an overburdened agency to focus on those who need care for only a short time, Dombi said.
Another factor that may have a negative effect on chronically ill patients is Medicare’s Home Health Compare ratings website. It includes grades on patient improvement, such as whether a client got better at walking with an agency’s help. That effectively tells agencies who want top ratings “to go to patients who are susceptible to improvement,” Dombi said.
This year, some home care agencies will earn more than just ratings. Under a Medicare pilot program, home health firms in nine states will start receiving payment bonuses for providing good care and those who don’t will pay penalties. Some criteria used to measure performance depend on patient improvement, Holt said.
Another new rule, which took effect last Saturday, prohibits agencies from discontinuing services for Medicare and Medicaid patients without a doctor’s order. But that, too, could backfire.
“This is good,” Holt said. “But our concern is that some agencies might hesitate to take patients if they don’t think they can easily discharge them.”
This article was written with the support of a journalism fellowship from New America Media, the Gerontological Society of America and the Silver Century
Gov. Gina Raimondo has proposed balancing next year’s $9.38-billion budget with nearly $166 million in cuts to Medicaid. None of the changes will affect eligibility or benefits, officials said. Co-Pays and other cost reducing strategies will be implemented.
A plan to “rebalance” long-term care and nursing home services would account for another $18.2 million in savings. That includes “modernizing” the eligibility process for long-term care. The budget also calls for a 1-percent increase to nursing home reimbursement rates. In recent years, those rates have seen as much as a 3-percent increase.
Asked if he expected backlash from the nursing homes, Beane said, “I think, frankly, the nursing homes will be pleased to see that some part of the COLA is going to be included here. That’s the first time the governor’s proposed budget has included an increase. She has said in her cover letter to this budget that if revenues are up, this is an area she’d like to see more investment.”
As the long term care insurance market continues to struggle with its future, knowledge as to the rules of Medicaid eligibility that will pay for long term skilled nursing is critical. Individuals can only have $4,000 of countable resources to qualify for Medicaid. Your home, car and personal property is not a countable resource and is protected. Under the proposed budget, those rules appear to remain unchanged. However, what are you to do with savings, investment accounts, a second home or investment property? Will you be forced to liquidate those assets and spend them down on my long term nursing care below $4,000 before I qualify for Medicaid? Without a plan and proper advice, the answer is likely yes for most. However, with a proper plan, these assets can be protected for yourself, your spouse and your heirs. Contact us to discuss how.
Health Costs May Gobble Up Social Security Benefits
Healthcare for the average woman means they could spend an estimated 70 percent of her retirement check on health care costs, according to a recent study by the Nationwide Retirement Institute. The average man fares better, but still uses nearly half of his benefits to cover medical expenses.
Here’s how the Nationwide analysis reached its disturbing healthcare estimates: It assumed a woman with a life expectancy of 88 married a man who would live to 85 and they both claimed Social Security at 62, which is the earliest and most popular age to file for retirement benefits, regardless of gender. More than half of elderly married couples and nearly 75 percent single retirees depend on Social Security for the majority of their income in retirement. “Women disproportionately rely on Social Security in retirement,” said Nancy Altman, co-director of Social Security Works, which advocates for the expansion of the program. In fact, roughly two-thirds of Social Security beneficiaries age 85 and older are women. In the Nationwide’s bleak scenario, the man collects a monthly benefit of $1,543 and the woman collects $1,171 per month. (The average monthly benefit for a retired worker is $1,350, according to the Social Security Administration.)
Nationwide projects hefty health costs for the hypothetical couple. The man would pay $214,278 in medical costs in retirement and the woman would pay more than $289,682, because of her longer lifespan. The forecast includes what the couple would have to spend on long-term care at a nursing home or in an assisted living center.
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Promising new research on Alzheimer’s at Butler Hospital and Brown University begins with a simple swab of the cheek
Cognitive impairment such as Alzheimer’s is a prevalent cause for needing long-term care. As the disease progresses, it undermines a persons ability to live independently in the community. Families who are faced with this disease, are a loss as to how to care for their loved ones. Estate Planning is a critical step in this process. Another, is learning and understanding more about the disease and what research is being done around it.
PROVIDENCE, R.I. — The weather one recent evening reflected the nature of the topic when a small crowd gathered at Butler Hospital to learn more about Alzheimer’s disease. It was cold and dark — in a word, gloomy.
Such is the illness, which erases memory and personality while burdening relatives and caregivers on its path to inevitable death. As yet, there is no cure.
But the man who drew these people from the comfort of home preaches hope, in the form of groundbreaking research he conducts with other scientists around the world.
On this evening, Dr. Stephen P. Salloway did more than preach.
Using the military metaphor he favors, he sought to enlist recruits in a new phase of a campaign he likens to the Second World War, when, against great odds, Allied forces defeated a mighty foe.
“I’m very excited that we are building an infrastructure worldwide to fight Alzheimer’s disease,” Salloway said as he began his presentation. “Many of our same allies in World War II are allies in this fight against Alzheimer’s.”
The scientist projected a slide describing research efforts around the planet, with Europe, Australia, North America and parts of Asia pinpointed as strategic centers.
“We are making progress, and there are other initiatives and consortiums, here and abroad, moving this forward,” Salloway said.
On he went, through slides of diseased brains, of German neuropathologist Alois Alzheimer’s first, historic patient, and of the APOE gene, which may indicate increased risk of the disease, depending on which of six possible variants an individual carries. Other factors, including age, diet, lifestyle and overall health, also influence risk.
With researchers elsewhere, Salloway and his team at Butler’s Memory and Aging Program are seeking volunteers to enlist in the so-called Generation Study, for men and women age 60 to 75 who are cognitively normal — but may be at risk, depending on their genetic makeup.
Screening begins with a swab of the cheek, which is analyzed for the APOE gene; eligible candidates may then decide to enroll in clinical studies of new medications, including a drug known as CNP520, which has just entered a trial sponsored by Novartis Pharmaceuticals in collaboration with Amgen and Banner Alzheimer’s Institute.
“Not only can you find out your genetic risk by having the APOE test,” Salloway said, “but then if you’re the right age group and meet the criteria and you’re interested, you could also participate in a prevention trial to try to lower the risk. We’re very excited about that.”
Many in the audience were as well. Eighteen would sign the necessary papers and have their cheeks swabbed. They would become the latest recruits in Salloway’s citizen army — which, when all studies and the Butler prevention registry are counted, now numbers more than 800.
Salloway’s aim is much higher.
Sandra Robinson Gandsman, a Pawtucket resident who spent most of her career in health-care marketing, was among those who enlisted with a swab and her signature. She was motivated, in part, by her knowledge of disease.
“Very honestly, this is more frightening than cancer,” Gandsman told The Journal. “If you get a diagnosis of cancer, there’s a possibility you can be cured. Certainly there are treatments that you can take. But Alzheimer’s — it’s kind of like, ‘Wow, there’s not much there.’”
The work of Salloway and others, she said, could put something there. Lives could be transformed for the better. New generations could escape the threat altogether if promising avenues prove true.
“He’s really on the cutting edge of this research, which is very exciting,” said Gandsman.
Sentiment also motivates Gandsman. She related the experience of a 73-year-old friend diagnosed with early-stage Alzheimer’s — that “mild” first of three phases of the disease characterized by “challenges performing tasks in social or work settings” and “forgetting material that one has just read,” among other symptoms, according to the Alzheimer’s Association.
“I noticed for a couple of years a lot of forgetfulness and repetition,” Gandsman said of her friend.
One day, she stepped on the tennis court with the woman, who had played the game for decades and was skilled at it.
“She didn’t know where she was,” Gandsman said. “She couldn’t keep score, but she didn’t know she couldn’t. She hit the ball and wasn’t sure where she was supposed to stand. I immediately called her husband. I thought she’d had a small stroke.”
“Her husband had been covering for her,” Gandsman said. “I didn’t realize it at the time.”
“Alarming” was the headline on Salloway’s slide listing Alzheimer’s statistics.
It was not hyperbole.
The prevalence of the disease doubles every five years after age 65, reaching as high as half of all people 85 and older. Lacking major advances, by 2050 an estimated 125 million people worldwide will have dementia, a broad category of brain afflictions that includes Alzheimer’s. Health-care costs for U.S. Alzheimer’s patients was estimated at $259 billion in 2017, a figure that does not include the billions of hours of free care, typically accompanied by significant emotional and other stresses, that family and friends provide.
Beyond the statistics is the reality of becoming one, as Salloway’s audience — mostly middle-age and older — acknowledged.
“If you ask older people what disease they fear most, what’s number one?” Salloway said.
“Alzheimer’s,” was the collective response.
“No treatment,” a man said. “You lose brain function. You lose your independence and your dignity.”
But optimism co-exists with alarm, which is another theme Salloway strikes when he speaks to the public, as he does regularly. Building an army is more than a desk job.
“In order to make a difference, we need to find better treatment,” he said. “Congress is getting older and they’re worried about Alzheimer’s, too. That’s one of the few things that Democrats and Republicans agree on: that Alzheimer’s is bad. And so there is now a national plan to fight Alzheimer’s, with a major goal of developing breakthrough treatments by 2025. And we’re working hard to meet that goal.”
Congress has done more than pay lip service, Salloway said, and his slide confirmed it: National Institutes of Health funding for Alzheimer’s research rose from $448 million in 2011 to $991 million in 2016, surpassing the billion-dollar mark last year, when it reached $1.39 billion. This year, research funding is projected to reach $1.8 billion.
“Cancer is $6 billion, so we’re still well below that, but we’re making progress,” said Salloway, a professor at Warren Alpert Medical School of Brown University. “You might have heard that Bill Gates announced he was investing $100 million in Alzheimer’s research. That’s terrific. We’re so excited about that. I think that’s going to stimulate others to donate as well.”
Special-education teacher Donna de Chauny doesn’t have millions to invest; like Gandsman, she answered Salloway’s call out of noble purpose.
“If some of the research that we participate in helps further the information that helps find a cure, then I am happy to participate,” de Chauny said.
Also like Gandsman, de Chauny was motivated by the experience of someone close: her mother, Collene Brinkman Kondratick, who lived with de Chauny and her husband in their Warren home for three years before the disease finally took her in October 2016, at the age of 83.
“When you watch somebody you love go through it, it’s just terrible,” de Chauny said.
Before moving from her home in North Carolina to Warren, Collene’s symptoms had become increasingly pronounced, even as she endeavored to hide them.
“She knew she couldn’t remember things,” her daughter said. “Every time you’d talk to her on the phone, the same things would repeat themselves because she was trying to have a conversation. And she couldn’t really gather the words to react to what you were saying in an appropriate way.”
But she kept trying to maintain a veneer of normalcy, even after relocating to Rhode Island.
“She would pour her coffee on her cereal in the morning and think nothing of it,” de Chauny said. “We’d say, ‘I don’t think that’s going to taste too good, Mom.’ And she’d say, ‘Oh, that’s always the way I have it.’”
Collene was not the only family member to suffer from Alzheimer’s, de Chauny said; all three of her mother’s siblings also died of the disease.
“It’s kind of a little scary,” de Chauny said. “My sister said, ‘Do you really want to find out if you have higher risk?’ And I said ‘Yes, because there are some things that I can do myself, changes in my life, like diet and exercise, to reduce the chances.’”
Salloway spoke to that during the swabbing event, the second held at Butler, saying that remaining mentally and physically active and socially engaged appear to reduce risk, as do “eating a balanced, Mediterranean-type diet,” sleeping well, quitting smoking, maintaining healthy weight and blood pressure, and other measures. All are encapsulated in the mantra: “What’s good for the heart is good for the brain.”
But more than lifestyle is involved in Alzheimer’s, which is characterized by buildups of two proteins in the brain: tau, which forms tangles inside neurons, and amyloid, which forms damaging plaque in connections between nerve cells. The precise mechanism of these protein buildups is not entirely understood, but research has brought advances.
One recent development has been a type of Positron Emission Tomography, or PET, technology that can reveal the presence of plaque years before symptoms of Alzheimer’s appear; previously, a diagnosis could be confirmed only at autopsy, with a microscopic examination of the brain.
Another has been clinical trials of Aducanumab, a drug made by Biogen that has demonstrated success in reducing amyloid plaque. The drug holds such promise that the paper describing the research behind it made the cover of the Sept. 1, 2016, edition of Nature, one of the world’s leading science publications. Salloway was one of the paper’s authors.
A third is a technique being developed by Salloway’s group and a team led by Peter J. Snyder, professor of neurology at the Alpert Medical School and Lifespan’s chief research officer, that could be used to diagnose Alzheimer’s by retinal imaging, a relatively simple and inexpensive procedure that an ophthalmologist could perform.
And there is more promising research elsewhere in the state, including that conducted by University of Rhode Island neuroscientist Paula Grammas, whose work focuses on the role the vascular system plays in Alzheimer’s. Grammas is the inaugural director of the George and Anne Ryan Institute for Neuroscience.
Salloway projected a slide, “Rhode Island as an incubator for innovation in AD research,” that included a photo of Grammas with Governor Gina Raimondo, URI president David M. Dooley, and former CVS Health Chairman and CEO Thomas M. Ryan, who established URI’s Ryan Institute.
“Rhode Island — because of our small size, everybody knows everybody,” Salloway said, to laughter.
But proximity and determination have more than comic value. With both, collaboration can flourish.
“We could really be an innovation center for Alzheimer’s research and prevention studies,” Salloway said.
Without volunteers, innovation would slow. And so, Salloway urged his latest recruits to encourage others to join the army.
“You’re already doing a lot to fight Alzheimer’s,” he said, “but I want you to take the Alzheimer’s challenge. I want you to tell five other people that you came here tonight to find out about Alzheimer’s research. We hope you will spread the word around.”
And also, host “swabbing parties” at homes or civic organizations, with the Butler team handling the logistics.
“This is our second swabbing event and we’re happy to host it here, but we’re not restricted,” Salloway said. “This is a mobile party. We’ll come to you. We’re happy to help you host a swabbing party. This needs to go viral.”
To learn more about Alzheimer’s research at Butler and how to enroll in a study, call (401) 455-6402 or visit butler.org/memory
Alzheimer’s disease research funding
National Institutes of Health spending in 2011
NIH spending in 2017
NIH projected spending in 2018
NIH spending on cancer research in fiscal 2017
Sources: NIH, U.S. Senate Committee on Appropriations
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About Mathew J. Leonard ESQ.
Matthew J. Leonard's practice is concentrated in business law, estate and asset protection planning, elder care, civil and probate litigation and real estate. He is a member of the Rhode Island, Massachusetts and Florida bars. He is a frequent lecturer and has authored and spoken on in many occasions through the state.