A recent investigation conducted by Kaiser Health News and National Public Radio documents what all too many Americans are experiencing. “More than 100 million people in America — including 41% of adults — are beset by a health care system that is systematically pushing patients into debt on a mass scale,” writes Noam N. Levey. “The investigation reveals a problem that, despite new attention from the White House and Congress, is far more pervasive than previously reported. That is because much of the debt that patients accrue is hidden as credit card balances, loans from family, or payment plans to hospitals and other medical providers. The picture is bleak. ‘Debt is no longer just a bug in our system. It is one of the main products,’ said Dr. Rishi Manchanda, who has worked with low-income patients in California for more than a decade and served on the board of the nonprofit RIP Medical Debt. The burden is forcing families to cut spending on food and other essentials. Millions are being driven from their homes or into bankruptcy. Moreover, a highly lucrative industry is capitalizing on patients’ inability to pay. Hospitals and other medical providers are pushing millions into credit cards and other loans. Patient debt is also sustaining a shadowy collections business fed by hospitals — including public university systems and nonprofits granted tax breaks to serve their communities — that sell debt in private deals to collections companies that, in turn, pursue patients. ‘People are getting harassed at all hours of the day. Many come to us with no idea where the debt came from,’ said Eric Zell, a supervising attorney at the Legal Aid Society of Cleveland. ‘It seems to be an epidemic.’”

NPR’s Noam N. Levey also shines a light on one other aspect of the health care debt burden. “The nursing home industry has quietly developed what consumer attorneys and patient advocates say is a pernicious strategy of pursuing family and friends of patients despite federal law that was enacted to protect them from debt collection. ‘The level of aggression that nursing homes are using to collect unpaid debt is severely increasing,’ said Lisa Neeley, a Massachusetts elder law attorney. The legal strategy is often rooted in admissions agreements, the piles of paperwork that family or friends sometimes sign, not realizing the financial risks. For their part, long-term care officials and attorneys say they must use the courts when bills go unpaid. And nationally, Beth Martino, a spokesperson for the American Health Care Association, said lawsuits against families are ‘not a common occurrence.’ But consumer attorneys in California, Illinois, Kentucky, Massachusetts, New York, and Ohio said they regularly see lawsuits against family and friends. Nursing homes, they say, slip the admissions agreements into papers that family members sign when an older parent or sick friend is admitted. ‘They are given a stack of forms and told, Sign here, sign there. Click here, click there,’ said Miriam Sheline, managing attorney at Pro Seniors, a nonprofit law firm in Cincinnati.”

While the exact extent of the Long Covid problem remains uncertain, there is increasing consensus about its growing threat. As reported by WebMD’s Eliza Partika, “whether it's 5% of the 92 million officially recorded US Covid-19 cases, or 30% — on the higher end of estimates — that means anywhere between 4.5 million and 27 million Americans will have lingering effects of long Covid, according to Bryan Lau, PhD, a professor of epidemiology at the Johns Hopkins Bloomberg School of Public Health. Even the CDC says only a fraction of cases have been recorded. That, in turn, means tens of millions of people who struggle to work, to get to school, and to take care of their families — and who will be making demands on an already stressed US healthcare system. Surveys have shown more than half of adults with long Covid who worked before becoming infected are either out of work or working fewer hours. Associated conditions — such as fatigue, malaise, or problems concentrating — limit people's ability to work, even if they have jobs that allow for accommodations. ‘There's a wide diversity in severity,’ says Hopkins’ Lau. ‘Someone can have long Covid and be fully functional, while others are not functional at all. We still have a long way to go before we figure out why.’” 

The Biden administration has taken aim at “Long Covid” in two documents issued by the Department of Health and Human Services. The first –the National Research Plan on Long Covid (the Research Plan), created in coordination with 14 government departments and agencies, introduces the first U.S. government–wide national research agenda focused on advancing prevention, diagnosis, treatment, and provision of services and supports for individuals and families experiencing prolonged post-Covid health problems. The Research Plan stresses four guiding principles to govern federal government data analysis work: health equity, accelerating and expanding current research, orienting the research effort to improve patient care, and partner engagement. The second document, Services and Supports for Longer Term-Impacts of Covid-19 Report (Services Report), outlines federal services available to the American public to address longer-term effects of Covid-19.

While welcoming the new initiatives, Ryan Prior and Kimberly Knackstedt, writing in StatNews, believe the reports fall short of “robust, far-reaching goals. Clinical trial research via the $1.15 billion Researching Covid to Enhance Recovery (RECOVER) initiative is slated to begin in late 2022, nearly three years after the first long haulers got sick — and stayed sick. Further, while the list of services and supports the report cites is critically needed, the report does nothing to improve access to such services or educate providers about them.” Going forward, they argue, the Long Covid plan should emphasize three elements: a focus on the condition as a disability; research on similar post-infectious diseases like chronic fatigue syndrome, and patient centered communication and implementation, including input from the Long Covid patient movement. “For those with long Covid,” the writers note, “the best initial treatment may well be rest. In order for patients to have the ability to rest, policies for short-term disability, worker’s compensation, and school and employer accommodations should be fully attuned to long haulers’ needs, addressing their health requirements so they can still pursue an education or provide for themselves and their families.”

Nursing home staffing levels continue to generate concern. The latest staff turnover figures from the Long Term Care Community Coalition (LTCCC), based upon the first quarter of 2022, indicate that “the average nursing home turns over more than half (53.3%) of its nursing staff within a year.” Furthermore, LTCCC reports, “average nursing home staffing (3.62 Total Nurse Staff Hours Per Resident Day (HPRD) is far below the levels needed to meet basic care needs for the nation’s 1.1 million nursing home residents; contract employees accounted for 9.7% of all nurse staff hours in Q1 2022, nearly double the rate from Q1 2021; and total RN Staff HPRD is down more than 10% since the first quarter of 2021 while total staffing levels have decreased about 8% in that period.”

Against this backdrop CMS has announced its next move to implement President Biden’s April call for reforms to improve the safety and quality of nursing home care, hold nursing homes accountable for the care they provide, and make the quality of care and facility ownership more transparent. CMS is beginning a comprehensive study project designed to guide a proposed minimum staffing regulation now scheduled for publication in the spring of 2023. Federal law currently requires Medicare and Medicaid-certified nursing homes to provide 24-hour licensed nursing services, which are “sufficient to meet nursing needs of [their] residents” and must use the services of a registered professional nurse at least 8 consecutive hours a day, seven days a week. The new staffing study will seek to help identify a staffing level, including RNs, LPNs/LVNs, and CNAs, that will establish a threshold below which residents would be at substantially increased risk of not receiving the safe and quality care they deserve. 

CMS had received more than 3000 responses to a pre-project request for public comment on how to conduct its staffing study. Many of the comments came from family members or caretakers of residents living in nursing homes; the vast majority voiced concerns related to residents not receiving adequate care due to chronic understaffing in facilities, including residents going entire shifts without receiving toileting assistance, leading to falls or the increased presence of pressure ulcers. From the long-term care industry, CMS heard cautionary words during a late August “listening session.” Both Dr. David Gifford, chief medical officer for the American Health Care Association (AHCA) and Janine Finck-Boyle, vice president of health policy for aging services organization LeadingAge, reported Skilled Nursing News’ Jordyn Reiland, “expressed concern over a seemingly one-size-fits-all approach when nursing home care has changed so dramatically, and continues to do so, based on acuity levels. CMS, observed Luke Neumann, vice president of service and relationship development at Florida-based Palm Garden Healthcare, should also be factoring in therapists, psychologists and social workers, podiatric specialties, culinary staff and other team members who provide daily care to residents. ‘We know,’ said Finck-Boyle, ‘that here we’re looking and talking about nurses, but there are nursing homes throughout the country that have changed some of their models. We need to make sure that all the interdisciplinary team is taken into account.’”

The Center for Medicare Advocacy is calling attention to a practice it finds disturbing and on the increase: the repeated issuance by Medicare Advantage plans of non-coverage notices (NOMNCs) to SNF patients. Although patients frequently win expedited appeals of the Medicare coverage denials, their Medicare Advantage plans often respond by issuing a new NOMNC within several days after losing the first appeal, essentially starting the coverage denial process over again and forcing enrollees and their families to respond to a barrage of routine coverage denials. To facilitate the filing of a formal complaint with the plan, known as a Grievance, CMA has published a form and instructions aimed specifically at repetitive NOMNCs.

Taking aim at both the promise and challenge of hospital at home (HaH) care services, AARP has published a family caregiver roadmap to help ensure that family members assent is sought for acute care at home, that caregivers are provided training for medical/nursing tasks they agreed to undertake, and that both the patient and caregiver feel reasonably confident of experiencing a successful transfer to post acute care. Many current “HaH programs,” the roadmap observes”, have shown favorable outcomes, and research demonstrates that HaH models, when compared with traditional hospital care, are associated with improved patient safety, reduced mortality, better patient and family care experiences, and reduced costs. Though not required to do so, however, family caregivers may be providing increased assistance to the patient with activities of daily living when the HaH care team is not present, and caregivers are likely handling household chores (e.g., cleaning, laundry). Moreover, patients’ needs are often higher during the acute care episode, necessitating more intensive caregiver assistance. AARP’s research revealed inconsistent availability of services to provide caregivers with respite and support as well as a lack of clear information about support and respite services and how caregivers could access them when they are available.”

Researchers led by Ohio State University’s Wendy Yi Xu, PhD, have looked at rural versus urban differences in the use of diagnostic tests and healthcare visits for early onset Alzheimer's disease and related dementias. Their conclusions, as reported by Medscape’s Jake Remaly: “Rural patients with early onset dementia are more likely than urban patients to rely solely on primary care physicians or nurse practitioners for the initial diagnosis and treatment of the disease; patients in rural areas are also less likely to see psychologists and undergo neuropsychological testing; and patients who forgo such specialist visits and testing may be missing information about their condition that could help them prepare for changes in job responsibilities and future care decisions. More than half of primary care physicians who care for people with Alzheimer's disease say dementia specialists in their communities cannot meet demand. The problem is more urgent in rural areas. Roughly half of nonmetropolitan counties in the United States lack a practicing psychologist. One surprising finding in the new study: The lack of obvious differences in access to neurologists -- surprising given the more than fourfold difference between urban and rural areas in the supply of neurologists. Health plans, the researchers note, may maintain more access to neurologists than psychologists because of relatively higher reimbursement for neurologists.”

Early detection of the onset of Parkinson’s disease would be a significant step in developing better interventions, but the goal has proved daunting. Now, as the Washington Post’s Pranshu Verma writes, “researchers in the United States have developed an artificial intelligence system that could detect Parkinson’s disease in patients earlier than currently possible by analyzing a person’s breathing pattern. MIT scientists report they have developed a tool called a neural network — algorithms that mimic the way a human brain works — that can identify whether someone has Parkinson’s disease from how they breathe while sleeping. Despite the disease’s prevalence, doctors don’t have a widely accepted way to screen for Parkinson’s in patients, said James Beck, the chief scientific officer at the Parkinson’s Foundation. This often results in doctors misdiagnosing the disease or catching it much later in its progression, when tremors may already be apparent. The MIT study’s neural network ended up predicting with high accuracy whether a person had Parkinson’s or not. It was 90 percent accurate based on data from one night’s sleep. The model improved to 95 percent accuracy when analyzing 12 nights of breathing patterns. The neural network could also track the severity of Parkinson’s in a patient. Some medical ethicists are cautioning, however, that the algorithm underlines a broader worry in health care: that technological advances are being used to bolster claims computers should fuel more medical decision-making without yet having significant evidence to back it up. ‘If you read about AI, there’s a vast amount of overselling … that AI is going to solve vast amounts of practical problems,’ said Torbjørn Gundersen, who researches the use of algorithms in medicine at Oslo Metropolitan University in Norway. ‘It hasn’t really proved that yet.’”

Boston University researchers, reports Stat’s Megan Molteni, have some intriguing news for sufferers of memory loss: “Sending weak electrical current into the brain for 20 minutes a day for four days in a row reversed declines in working and long-term memory that come with aging. The researchers found that the effects lingered even after the electricity was turned off. When they tested subjects a month later, many of the improvements from the brief sessions of brain stimulation remained. The findings provide some of the strongest support yet for a method called transcranial alternating current stimulation, or tACS, as a potential means for boosting mental functions essential to navigating the world and understanding one’s own place in it. Unlike more invasive forms of brain stimulation that require brain surgery to install chips and implants, tACS involves little more than wearing a modified swimming cap studded with dozens of electrodes. As people age, brain circuits become uncoupled. Researchers hope to use tACS to bring brain wave oscillations back up to the right speed so that far-flung regions of the brain can talk to each other again. It might thus be possible to treat different kinds of memory deficits just by tuning different brain frequencies. Meanwhile, plenty of companies have started to sell devices that deliver zaps of electricity to the brain, prompting researchers to issue warnings that the race to deliver direct-to-consumer brain wearables is outpacing the evidence that they work. Some of these questionable devices, like one that uses focused ultrasound for treating Alzheimer’s disease, come at great personal cost to patients desperate to slow the devastating loss of their memories.”

Family caregivers for long-term care residents can avail themselves of a mandated resource -- the SNF resident and family council -- to harness their collective advocacy role. To strengthen the councils’ efforts, LTCCC has published a “Family Council Toolkit” that includes numerous regulatory and condition-specific fact sheets, as well as council meeting planning materials.

The National Academy for State Health Policy (NASHP) will host a webinar on National Family Caregiving Strategy: A State Roadmap for Supporting Family Caregivers,) October 3, 2022, 2-3 PM ET. The webinar will look at opportunities within the academy’s newly released National Family Caregiving Strategy and how it can provide a roadmap for states that are interested in developing and expanding supports for family caregivers. A federal official, state administrator, and philanthropic expert will highlight how the state of Delaware is listening to family caregivers to better support their needs. Register here.

NASHP has developed an interactive map that explores how states cover respite care and adult day services through Medicaid Managed Long-Term Services and Supports (MLTSS) — including who is eligible for these services and how states cap respite services. 

A significant milestone in the Medicare program appears to be fast approaching, according to the Kaiser Family Foundation: Medicare Advantage is close to becoming the predominant way that Medicare beneficiaries get their health coverage and care. “Nearly half of eligible Medicare beneficiaries,” KFF reports, “ 28.4 million out of 58.6 million Medicare beneficiaries overall – are now enrolled in Medicare Advantage plans. That represents a more than doubling of the share of the eligible Medicare population enrolled in such plans from 2007 to 2022. Enrollment is projected to cross the 50 percent threshold as soon as next year. The rise of Medicare Advantage signals the transformation of Medicare to a program in which a majority of people receive benefits by enrolling in plans offered by private health insurance companies.”

The steady growth of Medicare Advantage penetration has generated calls for heightened oversight, not only from such federal advisory entities as MedPAC, but from advocacy groups concerned that improvements to traditional fee-for-service Medicare are being neglected while MA’s shortcomings are receiving insufficient attention. At the end of August the Center for Medicare Advocacy (CMA) sent CMS a 42-page set of comments focusing on the future evolution of Medicare coverage. “The universal, traditional Medicare program, preferred by most beneficiaries,” wrote CMA, “has been neglected for years, while the private Medicare Advantage system has been repeatedly bolstered and promoted. Over the last several years, a number of legislative, regulatory, and policy changes have combined to create an imbalance between traditional Medicare and Medicare Advantage. While Medicare Advantage may work for many, we don’t hear from these individuals. Instead, we hear from beneficiaries – commonly those who are sicker and have greater health needs – who have been poorly served by their MA plan. Certainly, beneficiaries in traditional Medicare face barriers to coverage and care. However, from our experience assisting Medicare beneficiaries, borne out by independent research, many of these barriers are exacerbated for beneficiaries enrolled in Medicare Advantage.”

California and New York have moved to provide Medicaid recipients who have rare cancer diagnoses access to National Cancer Institute-designated Comprehensive Cancer Centers. As reported by Modern Healthcare’s Karen Hartnett, the centers are often left out of narrow insured networks because of costs. “In New York, Gov. Kathy Hochul signed a law in April that enables New York residents with Medicaid or exchange policies to receive in-network services from Memorial Sloan Kettering Cancer Center in New York City and other NCI-designated centers in the Empire State. In California, the state Senate unanimously approved a similar measure in May and the state Assembly is expected to follow suit. The moves follow research indicating that cancer patients in the safety-net program experience far worse health outcomes than those with commercial insurance. Black patients, who represent a disproportionate share of Medi-Cal enrollees, were more likely to be diagnosed with cancer at later stages. Narrow networks, said hematologist-oncologist Dr. Joe Alvarnas at City of Hope Comprehensive Cancer Center in Duarte, may be sufficient for patients' ordinary needs but they prevent low-income people with complex cancer needs from receiving the most advanced care, even when it's their only clinical option."

Phoenix-like, a Medicaid work requirement has suddenly resurfaced, courtesy of a Georgia federal District Court decision. As reported by the Associated Press’s Sudhin Thanawala, “the work requirement had been approved by then-President Donald Trump’s administration, but CMS announced last year that it was revoking its approval. That prompted Georgia officials to sue. U.S. District Judge Lisa Godbey Wood has now ruled that the Biden administration's decision to revoke approval of the work requirement, along with a related Georgia proposal to charge some Medicaid recipients monthly premiums, was ‘arbitrary and capricious on numerous, independent grounds.’” What further action CMS will take–appeal or acquiescence–remains to be seen.

Under an August FDA ruling, AARP bloggers write, “people with mild to moderate hearing loss will be able to directly purchase basic hearing aids in pharmacies, retail stores and online, an option that was not previously available. Consumers will no longer be required to get a hearing exam, a prescription from a doctor for a hearing aid, and visit an audiologist to get a basic hearing aid. The high cost of hearing technologies and services is the biggest barrier to older adults with hearing loss seeking the care they need. Moreover, many people often face high costs more than once because hearing aids must be adapted to the changing severity of hearing loss.” And there’s the rub, still, for people needing treatment for significant hearing issues. “In general,” writes Walker, “insurance coverage of hearing care for older adults is limited. Many commercial health insurance plans do not cover hearing services or aids. Traditional Medicare does not cover hearing exams, except in limited circumstances. Nor does the program pay for hearing aids or fitting services.” (For five ways over-the-counter devices differ from prescription versions, see AARP’s discussion here.)

On September 22, 2021, the Raise Act Family Caregiver Advisory Council delivered its initial report to Congress. The document included a comprehensive review of the state of family caregiving and 26 recommendations for how the federal government, states, tribes, territories, and communities—in partnership with the private sector—could better Recognize, Assist, Include, Support, and Engage family caregivers. Now, one year later, the National Association for State Health Policy has published a “Road Map” presenting a significant number of state actions that have been implemented in pursuit of fulfilling the Council’s vision. More than 10 states’ strategies are featured, including: fostering caregivers’ inclusion on the care team; building identification and uniform assessment of family caregivers into state-funded programs and services; ensuring the family members receive the information they need to care for the individual in the new setting prior to transitions in care setting, especially hospital discharge; and ensuring providers and other members of the care team know how to effectively engage family caregivers.

The Scan Foundation and NORC at the University of Chicago updating their groundbreaking 2019 “Forgotten Middle” study, have assessed the financial strength of aging middle income seniors. Their conclusion: “By 2033, more than 11 million middle-income seniors aged 75 and older may not be able to pay for assisted living and are also unlikely to qualify for Medicaid to pay for their long-term care needs.” NORC researchers found that the middle-income cohort of seniors grew by 7.5 million (89 percent) from 2018 to 2033. In other findings: seniors are becoming more racially and ethnically diverse, with people of color making up 22 percent of the middle-income population in 2033; over the next decade, the number of middle-income seniors will almost double—reaching 16M adults ages 75+ by 2033; middle-income seniors may be more reliant on paid caregiving since a majority of them will be unmarried in 2033, and many do not have children living nearby; without selling their homes, three-quarters of middle-income seniors (11.5M) have insufficient resources to pay for private assisted living.

Last April the National Academy of Medicine published a landmark report calling attention to the “ineffective, inefficient, fragmented” US long-term care universe. The Boston Globe’s Robert Weisman took himself across the Atlantic to look at a country that does long-term care differently. While obviously not comparable to America in terms of size or complexity, “a visit to the Netherlands,” Weisman writes, “a nation of 17 million, jutting into the North Sea, offers a look at a society grappling seriously with the struggles and costs of aging. Like their American counterparts, the Dutch face not only a rapidly growing older population but also a worsening shortage of elder care workers. But in the Netherlands, there’s an age-friendly game plan, bolstered by a broad consensus that older people deserve to get the care they need, and that they shouldn’t feel isolated or warehoused. The Dutch use the word solidariteit, or solidarity, to describe their commitment to older residents. The Netherlands was the first country in Europe to introduce a mandatory long-term care system in 1968. It has updated and refined its plan several times since, holding to its vision of universal care even as it relies more on managed competition between nonprofit providers and insurers to control costs. The most recent overhaul, in 2015, aims to help residents age in place. The cost of the Dutch system is enormous; over 4 percent of its gross domestic product is spent on long-term care, more than any other advanced country. The equivalent expenditure in the US would top $800 billion per year, more than what is now spent on Medicare, which doesn’t cover long-term care. Mandatory payroll deductions for elder care, including contributions from employers, amount to as much as 9.6 percent of income for Dutch workers. By contrast, the US spends about 1.5 percent of its GDP on late-in-life care — less than any Western European country, Canada, or Japan.”

The annual Innovations in Alzheimer’s Caregiving Awards program is made possible with support from The Rosalinde and Arthur Gilbert Foundation and the Bader Philanthropies, Inc.

Last year, winners included "Art Is...In"(The Memory Center at The University of Chicago Medicine), CARE NYC (Queens, NY), and Elderwise (Seattle, WA).

Please note: Applications must be submitted by 8 p.m. Pacific Time on Oct 10, 2022. Apply early.

Follow Family Caregiver Alliance / National Center on Caregiving on Twitter @CaregiverAlly and Executive Director Kathleen Kelly @KKellyFCA.

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