Vol. 20, No. 8
December 2, 2020

“Jill Naiberk,” writes The New York Times Katherine J. Wu, “a nurse at the University of Nebraska Medical Center, has spent more of 2020 in full protective gear than out of it. About twice a day, when Ms. Naiberk needs a sip of water, she must completely de-gown, then suit up again. Otherwise, ‘you’re hot and sweaty and stinky,’ she said. It’s her ninth straight month of COVID duty. ‘My unit is 16 beds. Rarely do we have an open one. And when we do have an open bed, it’s usually because somebody has passed away.’ Many of her I.C.U. patients are young, in their 40s or 50s. ‘They’re looking at us and saying things like, “Don’t let me die” and “I guess I should have worn that mask.” Sometimes she cries on her way home, where she lives alone with her two dogs. Her 79-year-old mother resides just a couple houses away. They have not hugged since March. ‘I keep telling everybody the minute I can safely hug you again, get ready, because I’m never letting go.’”
President-elect Biden ascending, COVID 19 raging, vaccines emerging, and the holiday season beckoning: an edgy, American public gets ready to turn its back on an agonizing year and bid a very cautious welcome to a new one.
  • CMS urges cautious SNF holiday plans
  • COVID-19 surges again in nursing homes
  • Multi-facility carers spread virus
  • SNF infection control enforcement spurs controversy
  • Multiple woes threaten SNF viability
  • Health workers experience increasing ‘burnout’
  • COVID-19 stresses ‘traveling’ health care providers
  • Advocates praise ‘Green House’ long-term care facilities
  • Nursing homes need ‘disruptive’ remodeling
  • Sudden tooth loss worries COVID-19 ‘long haulers’
  • Utah nixes age crisis rationing criterion
CMS urges cautious SNF holiday plans
As the COVID-19 assault showed no sign of relenting, CMS, reported The National Consumer Voice for Quality Long-Term Care, took the unusual step of issuing an alert containing visitation and facility leave recommendations for nursing home residents and their families and representatives. Consumer Voice summarizes the recommendations in a helpful fact sheet: “Families and residents should continue to follow guidelines for visitation and adhere to the core principles of infection prevention. This includes remaining six feet or more apart, wearing a face covering, and limiting the number of family visiting at any one time. CMS advises against residents leaving the nursing home because doing so could increase a resident’s risk for exposure. The risk may be further increased by factors such as a resident’s health status, the spread of COVID-19 in the community, or attendance at large gatherings. Nursing home staff should discuss the risks of leaving the facility with residents and families and encourage alternative means of connecting, such as by phone or video.”
COVID-19 surges again in nursing homes
Underscoring the concerns that prompted the CMS alert, The Washington Post’s Rebecca Tan and Rachel Chason sounded an alarm about recent COVID-19 spikes: “Maryland and Virginia nursing homes battle explosive COVID-19 outbreaks — again. Despite stringent shutdown measures in place since March, widespread community transmission has allowed the highly contagious virus to creep back into facilities through asymptomatic employees, threatening the elderly residents most at risk of dying. The spike in cases in Virginia, Maryland and D.C. since August has not yet been followed by a notable surge in deaths. But health experts note that fatalities often lag several weeks behind new infections and warn that the uncontrolled spread of the virus in nursing homes could lead to a significant jump in deaths of COVID-19. Nursing homes are better prepared now than they were nine months ago, experts say, but some challenges — such as shortages of staff and protective equipment — persist. Systemic problems, including low wages, mean that many nursing homes are still relying on contract employees to fill shifts, inadvertently enabling the spread of the virus. ‘We never truly fixed the problems,’ said Jennifer Nuzzo, an epidemiologist at the Johns Hopkins Center for Health Security. ‘There were just a lot of Band-Aids.’”
Multi-facility carers spread virus
Complicating and compromising nursing homes’ COVID-19 battle, reports Kaiser Health News’ Jackie Fortier, “even with strict visitation rules UCLA and Yale researchers have found that a lot of nursing home workers are working at more than one facility. They said the findings suggest that staffers who work in multiple nursing homes are one source of the spread of infections. ‘There are some facilities in Florida, in New Jersey, where they’re sharing upwards of 50 to 100 workers,’ said UCLA associate professor Elisa Long, who, along with her colleagues, examined data during the federal visitor ban from March to May. “This is over an 11-week time period, but that’s a huge number of individuals that are moving between these facilities; all of these are potential sources of COVID-19 transmission. They also found the more shared workers a nursing home has, the more COVID-19 infections among the residents. ‘Not only does it matter how connected your nursing home is, but what really matters is how connected your connections are,’ Long said. ‘The researchers say they’ve informally dubbed these highly connected nursing homes as each state’s “Kevin Bacon of nursing homes,” after the Six Degrees of Kevin Bacon parlor game.’”
SNF infection control enforcement spurs controversy
In the wake of the first wave of COVID-19 nursing home deaths and now their renewed upsurge, the role of CMS enforcement of infection control requirements has been receiving heightened attention. According to a Washington Post investigation “government inspectors, deployed by CMS during the first six months of the crisis, cleared nearly 8 in 10 nursing homes of any infection-control violations even as the deadliest pandemic to strike the United States in a century sickened and killed thousands. Those cleared included homes with mounting coronavirus outbreaks before or during the inspections, as well as those that saw cases and deaths spiral upward after inspectors reported no violations had been found, in some cases multiple times. All told, homes that received a clean bill of health earlier this year had about 290,000 coronavirus cases and 43,000 deaths among residents and staff, state and federal data shows. That death toll constitutes roughly two-thirds of all COVID-19 fatalities linked to nursing homes from March through August. Patient watchdog groups acknowledge that not every outbreak could have been prevented, even with adequate infection-control practices in place. But as the pandemic raged, the number of homes flagged for infection-control violations remained about the same as last year. Inspectors reported violations at about 3,500 homes, ranging from dirty medical equipment to a lack of social distancing. Though federal law allows CMS to levy fines of roughly $22,000 for each day a serious violation lingers, most providers were fined little or nothing at all. Many states launched their own oversight efforts in recent months, conducting infection-control reviews, moving to close homes and in a handful of cases opening criminal investigations. States have also imposed other penalties on behalf of CMS, such as requiring staff training and, in some cases, denying Medicare payments for new admissions. But the watchdog groups say the lack of inspection findings and significant fines undercut the agency’s ability to force change at troubled homes during the crisis.”

“CMS Administrator Seema Verma,” The Washington Post’s investigators continued, “defended the agency, saying plans to ramp up the quality of care in nursing homes began before the pandemic and continued at an ‘unprecedented’ clip as the crisis played out. In February the agency alerted nursing homes and states about the need to focus on infection prevention. Thousands of inspections were conducted in a matter of months. ‘I don’t think there’s any intent on our end to not hold nursing homes responsible for their actions,’ Verma said. ‘From the very beginning, CMS fought to go into these nursing homes. I was very alarmed about what I was seeing on the news reports.’ The number of fines increased, with the agency imposing penalties for infection control of roughly $26 million from March through August, according to The Post’s analysis, But even as inspectors chronicled deficiencies and the virus continued to spread, the vast majority of fines were still relatively small — in scores of cases — $5,000 or less. And many homes were not fined at all. ‘Prioritizing long-term care facilities in emergency situations is key, and we need to focus on a collaborative, not punitive, approach in helping nursing homes respond to this once-in-a-century pandemic,’ the American Health Care Association and National Center for Assisted Living said in a statement. ‘Citations and fines without assistance will not help us keep residents and staff safe from this virus.’”
Multiple woes threaten SNF viability
Soaring deaths, staff shortages, falling admissions: What do these COVID-19 impacts portend for the future of nursing homes? In an August 2020 survey of nursing home operators by the American Health Care Association (AHCA) and the National Center for Assisted Living (NCAL), reported by NextAvenue’s Sherri Snelling, “‘72% of respondents reported an inability to maintain operations through 2021; 40% said they won't last another six months,’ said Joe Steier, president/CEO of Signature HealthCARE, which operates 112 long-term care facilities in 10 Southern states. ‘The COVID pandemic was a black swan event no one was ready for that has resulted in the largest loss of beds in the country’s history.’ While older adults and nursing homes are at risk from the coronavirus pandemic, long-term care services and supports (LTSS) industry groups are signaling dire warnings about the continuum of care for the nation’s rising older population. ‘More than half of adults aged sixty-five plus require some form of LTSS as they continue to age. And the likelihood of need for care, and level of care needed, increases with age,’ said Lisa Sanders, a spokesperson for Leading Age, a 5,000-member advocacy organization serving nonprofit long-term providers and affordable housing for low-income older adults. Data crunched by ProPublica for its database of nursing home deficiencies, Nursing Home Inspect, has not found a significant difference between for-profit nursing homes and nonprofit nursing homes as far as which ones close or remain operating. If a sizable number of nursing homes do close, the most at risk will be the people on Medicaid who make up the majority of the 2.5 million residents in skilled nursing facilities. ‘For many Medicaid patients, nursing homes are the only place they have to go,’ said Mary Haynes, president/CEO of Nazareth Home, which operates two nursing homes in Louisville, Ky. ‘The federal and state governments have an obligation to serve the frail, the elderly and the disabled. But the COVID-19 crisis has exposed the shortcomings in funding for these populations. Current Medicaid funding levels cannot sustain nursing home operations.’”
Health workers experience increasing ‘burnout’
It could perhaps be analogized to the “long hauler” syndrome — the lingering, debilitating symptoms COVID-19 patients have been experiencing weeks and months after their initial affliction — to the burnout, that is, healthcare workers are undergoing after weeks of unruly limiting stress of caregiving. “The federal government,” writes Modern Healthcare’s Ginger Christ, “estimates that 233,013 healthcare providers have tested positive for COVID-19, 836 of whom have died, although that data is incomplete. Kaiser Health News and The Guardian have recorded at least 1,396 U.S. health care workers who have died from COVID-19. That some workers are leaving their positions ‘speaks to the level of distress and just sheer sort of professional burnout and being overwhelmed that people are experiencing,’ said George Mason University psychology department chair Keith Renshaw. ‘People get into these fields because they want to help, they want to do something.’ Madison, Wisconsin nurse Carol Siewert went into nursing because ‘it’s real work that makes a difference to people at a vulnerable time in their lives.’ She finds meaning in the job and appreciates the trust people place in her profession. But COVID-19 turned the hospital into what Siewert called a ‘health care prison.’ Because of the threat of COVID-19 exposure, patients in her hematology/oncology/bone marrow transplant unit mostly couldn’t have visitors, and many were too weak to make video calls. It was ‘isolation, all in hopes that they’ll live through this,’ Siewert said. On top of that, staff, let alone patients, could hardly hear the soft-spoken Siewert through her mask and face shield. And she wasn’t supposed to linger in patients’ rooms for fear of exposure. Because of the PPE, staff couldn’t tell one another apart. They wrote their names on their face shields and, when someone was coding, the team leader wore a red hat for identification. ‘I usually sit down next to some of my long-term patients and really get to know how they are doing,’ Siewert said. ‘So, everyone’s isolated, patients and staff.’ But Siewert doesn't plan to leave healthcare. For now, she plans to take on contract and limited-term employment nursing jobs. And, once the pandemic improves, she will look for a non-floor-staffing position. Or, as she quips, she could always become a baker.”
COVID-19 stresses ‘traveling’ health care providers
One category of health worker, writes Kaiser Health News’ Eli Cohan, may be particularly susceptible to both COVID-19 danger and career ending “burnout.” “As COVID-19 surges across the country, health care systems continue to suffer critical shortages, especially among non-physician staff such as nurses, X-ray technicians and respiratory therapists.
To replenish their ranks, facilities have relied on ‘travelers.’ Staff agencies have deployed tens of thousands nationally since March outbreaks in the Northeast. Now the virus is tearing through rural areas — particularly in the Great Plains and Rocky Mountain states — stressing the limited medical infrastructure. ‘Rural hospitals have relied largely on traveling nurses to fill staffing shortages that existed even before the pandemic,’ said Tim Blasl, president of the North Dakota Hospital Association. ‘They find staff for you, but it’s really expensive labor,’ he said. ‘Our hospitals are willing to invest so the people of North Dakota get care.’ The arrangement presents risks for travelers and their patients. Personnel ping-ponging between overwhelmed cities and underserved towns could introduce infections. As contractors, travelers sometimes feel tensions their full-time colleagues do not. Frequently employed by staffing agencies based thousands of miles away, they can find themselves working in crisis without advocates or adequate safety equipment. The work is exhausting, bruising and dangerous; thousands of front-line health workers have gotten the virus and hundreds have died. On social media and in email groups, recruiters for travelers circulate photos of sun-splashed skylines or coastlines emblazoned with dollar signs, boasting salaries two or three times those of staff nurses. They promise signing bonuses, relocation bonuses and referral bonuses. But when it comes to navigating workplace issues, ‘these people can just disappear on you,’ said Anna Skinner, a respiratory therapist who has traveled for over a decade. Even the number of hours they can count on working is out of their control. Some see an impossible choice. ‘We all know, if not for us, these patients would have no one,’ traveling nurse Lois Twum said, ‘but watching each other get sick left and right, it makes you wonder, is this worth my life?’”
Advocates praise ‘Green House’ long-term care facilities
With so much bad news about COVID-19 and long-term care, any positive developments, as the wait for effective vaccination proceeds, are welcome. The Washington Post’s Rebecca Tan provides some good news, albeit mixed, in the form of an upbeat report on “Green House” homes. “Not a single resident has contracted the coronavirus at Goodwin House’s small residential facility in Northern Virginia, where about 80 seniors live in homey apartments and keep their own sleeping and meal schedules. There’s been just one case at the Woodlands at John Knox Village in Broward County, Fla., where all 140 residents live in private rooms and are cared for by nurses who earn enough not to take a second job. These facilities, part of a national movement to create less-institutionalized long-term care, stand out in a pandemic that has killed more than 61,000 nursing home residents since March. At Green House homes, residents are one-fifth as likely to get the coronavirus as those who live in typical nursing homes — and one-twentieth as likely to die of the disease it causes. But as of this year, the 2,500 Green House residents represent just 0.2 percent of the 1.3 million nursing home residents nationwide. Of the 10 largest nursing home chains in the country, which collectively operate 2,000 facilities, none have adopted the Green House model. Some in the movement say corporations and government leaders have been unwilling to take the necessary steps, such as revamping the reimbursement system for Medicare and Medicaid or slashing paychecks for executives. Others fault what they see as a national tolerance of injustice toward the elderly and the mostly immigrant and minority workers who care for them. Nontraditional nursing homes are more likely to be situated in wealthier areas and owned by nonprofit organizations or private companies with deep pockets. Few are Medicaid-reliant facilities, which disproportionately serve low-income Black and Latino residents. ‘There are many long-term care providers who would love to explore more innovative models, but the way government reimburses long-term care does not always make this viable,’ the American Health Care Association said in a statement. More people than ever before are interested in alternative models of skilled nursing care, experts say. But while calls and emails to the Green House Project have surged, as of early November, just a handful of providers have contracts with the organization to build or renovate their facilities. And it doesn’t appear as though elected officials are actively weighing legislation urging them to do so.”
Nursing homes need ‘disruptive’ remodeling
Echoing the good news about Green Houses, Health Affairs blogger Deborah Gastfreund Schuss calls for pursuit of a “disruptive” model of long-term care. “The problem is that nursing homes still operate on antiquated assumptions made decades ago about the complexity of care their residents require. Previously, older adults populated nursing homes primarily for custodial care and needed little in the way of medical intervention. Scientific advances have introduced treatments for illnesses that previously were synonymous with death but now can be managed with medicine and therapies. As a result, those who wind up in nursing homes — many after typically brief hospital stays — are extraordinarily frail, with multiple underlying conditions that demand elaborate medication regimens, says Christopher E. Laxton, executive director of AMDA — The Society for Post-Acute and Long-Term Care Medicine. But the nursing home model has not adapted to this significantly more fragile group. ‘You’ve essentially turned the nursing home into a step-down unit of a hospital without staffing it adequately,’ Laxton says. ‘Really in the end, the major factor in good infection control is adequate staff, and staff who are dedicated to a wing or floor.’ Amid all this, the path to accessing quality care that could forestall the move to a nursing facility is packed with impediments. Home care, for the most part, is structured for short-term use. ‘They want to cut it off as soon as we get in there,’ says York, Maine, physical therapist Jerry Parrotta. It’s time to abandon our deeply entrenched and outdated views of long-term care in favor of a disruptive model that invests more heavily in quality home and community services such as leading-edge adult day health programs, each with rigorous standards. The giant pivot we need hinges on a broad commitment to enhancing the care of our growing disabled community while also supporting their caregivers, paid and unpaid. It calls for entrepreneurial ingenuity, and it will take strong political will regarding care-coverage options and the creation of and adherence to authentic quality standards. Families currently embedded in long-term care don’t have the luxury of time that such transformation demands. But galvanizing now will ease the way for countless others who likewise will struggle with sickness, as well as their families who will shepherd them through life’s most difficult passage.”
Sudden tooth loss worries COVID-19 ‘long haulers’
Just in time for turkey feasts The New York Times’ Wudan Yan brought news of yet another possible manifestation of post-COVID-19 “long-haul” symptoms: sudden tooth loss. “Dianna Berrant, founder of Survivor Corp, a Facebook page for people who have lived through COVID-19, reported that her 12-year-old son had lost one of his adult teeth, months after he had a mild case of COVID-19. (Ms. Berrent’s son had normal and healthy teeth with no underlying disease, according to his orthodontist.) ‘Teeth falling out without any blood is unusual,’ Angiogenesis Foundation president Dr. William W. Li said, ‘and provides a clue that there might be something going on with the blood vessels in the gums. The new coronavirus wreaks havoc by binding to the ACE2 protein, which is ubiquitous in the human body. Not only is it found in the lungs, but also on nerve and endothelial cells. ‘Therefore,’ Dr. Li says, ‘it’s possible that the virus has damaged the blood vessels that keep the teeth alive in COVID-19 survivors; that also may explain why those who have lost their teeth feel no pain. It’s also possible that the widespread immune response, known as a cytokine storm, may be manifesting in the mouth.’ ‘If a COVID long hauler’s reaction is in the mouth, it’s a defense mechanism against the virus,’ added Dr. Michael Scherer, a prosthodontist in Sonora, Calif. ‘Other inflammatory health conditions, such as cardiovascular disease and diabetes also correlate with gum disease in the same patients. Gum disease is very sensitive to hyper-inflammatory reactions, and COVID long haulers certainly fall into that category.’”
Utah nixes age crisis rationing criterion
Updating the October Caregiving Policy Digest story about Utah’s possible use of age as a criterion for rationing scarce resources in a health services crisis situation, the final crisis guidelines issued November 12 have removed the age factor in “tie-breaker” situations. Utah’s previous tiebreaker provision directed health care providers to give life-saving medical care to younger patients, even if the younger and older patient had similar expected health outcomes. Justice in Aging and other advocacy groups argued against the discriminatory allocation of life-saving medical treatment based solely on the age of the patient. The revised Utah standards expressly prohibit discrimination based on unlawful considerations of age, race, color, national origin, disability, or sex. Instead, resources will be triaged based on clinical factors or random allocation and not arbitrary and biased age considerations.
  • SCOTUS signals ACA survival
  • CMS expands ‘at home’ acute care
  • HRRP penalties hit hospitals
SCOTUS signals ACA survival
The post-election Supreme Court consideration, once again, of the fate of the Affordable Care Act ended by most accounts in a majority of justices signaling an unwillingness to pull the plug on Obamacare. As viewed by the pro-ACA Center for Medicare Advocacy, “it appears that a majority of Justices may reject the notion that the entire law must be nullified simply because Congress reduced the tax for not purchasing health insurance to $0. Key Justices signaled that if the mandate to have insurance coupled with a $0 penalty is found to be unconstitutional, that one provision may be ‘severed’ and the rest of the ACA can stand. That result is clearly correct under the Court’s own precedent. The plaintiff states and federal government have been irresponsibly arguing that protections for pre-existing conditions, along with all of the ACA’s other critical protections, should be invalidated. While the oral argument in front of the Supreme Court was promising, we will not know the final result until a decision issues, likely this spring.”
CMS expands ‘at home’ acute care
“CMS,” Modern Healthcare’s Steven Ross Johnson reports, “has provided additional flexibility for ‘at home’ acute care during the COVID-19 pandemic. In an update to its Hospitals Without Walls program that launched in March, CMS added new regulatory flexibilities that would allow hospitals to expand acute care services outside of their facilities. Hospitals can apply for a waiver that would allow then to transfer Medicare and Medicaid beneficiaries who are in the emergency department or admitted as inpatients to their homes for continued care with daily monitoring, evaluations and in-person visits from clinical staff. ‘We’re at a new level of crisis response with COVID-19 and CMS is leveraging the latest innovations and technology to help health care systems that are facing significant challenges to increase their capacity to make sure patients get the care they need,’ CMS Administrator Seema Verma stated. ‘With new areas across the country experiencing significant challenges to the capacity of their health care systems, our job is to make sure that CMS regulations are not standing in the way of patient care for COVID-19 and beyond.’ The change would waive requirements that nursing services be provided 24 hours a day and that a registered nurse be immediately available if needed for any patient receiving care on hospital premises. CMS believes more than 60 different acute conditions, such as asthma, congestive heart failure, pneumonia and chronic obstructive pulmonary disease can be treated safely in home settings with proper monitoring and treatment protocols. Six health systems have already received approval under the waiver program: Brigham and Women's Hospital and Massachusetts General Hospital in Massachusetts, Huntsman Cancer Institute in Utah, Mount Sinai Health System in New York, Presbyterian Healthcare Services in New Mexico and UnityPoint Health in Iowa.”
HRRP penalties hit hospitals
“Pandemic or no pandemic, the ninth round of penalties under the CMS Hospital Readmissions Reduction Program (HRRP) has been rolled out to nearly half the nation’s hospitals,” reports Kaiser Health News’ Jordan Rau. “CMS announced in September it may suspend the penalty program in the future if the chaos surrounding the pandemic, including the spring’s moratorium on elective surgeries, makes it too difficult to assess hospital performance. For this year, the penalties remain in effect. Retroactive to the federal fiscal year that began Oct. 1, Medicare will lower a year’s worth of payments to 2,545 hospitals. The average reduction is 0.69%, with 613 hospitals receiving a penalty of 1% or more. The number and severity of penalties were comparable to those of recent years, although the number of hospitals receiving the maximum penalty of 3% dropped from 56 to 39. ‘It’s unfortunate that hospitals will face readmission penalties in fiscal year 2021,’ said Akin Demehin, director of policy at the American Hospital Association. ‘Given the financial strain that hospitals are under, every dollar counts, and the impact of any penalty is significant.’ The industry has disapproved of the program since its inception, complaining the measures aren’t precise and it unfairly punishes hospitals that treat low-income patients, who often don’t have the resources to ensure their recoveries are successful. But Michael Millenson, a health quality consultant who focuses on patient safety, said the penalties are a useful but imperfect mechanism to push hospitals to improve their care. The designers of the penalty system envisioned it as a way to neutralize the economic benefit hospitals get from readmitted patients under Medicare’s fee-for-service payment model, as they are otherwise paid for two stays instead of just one.’”
  • AARP LTSS scorecard highlights ‘No Wrong Door’ progress
  • Midlife focus groups celebrate access to Medicaid
  • Home Alone Alliance offers CARE Act guidance
  • Researchers point AI tools to dementia diagnoses
  • Researchers laud community health workers
  • NASHP documents Medicaid caregiver supports
  • GAO pictures Australian, German, and British caregiver assistance systems
  • Thanksgiving 2020
AARP PPI Reports and Updates
From AARP’s Public Policy Institute came a number of important documents in November related to Long-Term Services and Supports (LTSS), Medicaid expansion’s impact on midlife adults, and efforts to support caregivers providing complex care.
AARP LTSS scorecard highlights ‘No Wrong Door’ progress
The AARP Public Policy Institute’s LTSS State Scorecard takes a detailed look at the Aging and Disability Resource Center/No Wrong Door (NWD) System. The good news in the 2020 update: NWD functions were one of five areas in which states showed the most progress in the 2020 Scorecard. “This report highlights state progress toward establishing high-performing ADRC/NWD Systems, by comparing results from previous iterations of the Scorecard and highlighting key themes. The most improved median domain score since the 2017 Scorecard is that of the provision of person-centered counseling to target populations, which increased by 20 percentage points. The median scores for the specific target populations — individuals with physical disabilities, individuals with intellectual and developmental disabilities (I/DD), and family caregivers — all increased by 33 percentage points. Additionally, the median score for streamlined eligibility increased by 11 percentage points, followed by person-centered counseling (10 percentage point increase). The top-scoring states strategically leveraged federal grants from ACL, as well as the NWD System component of the CMS Balancing Incentive Program. In addition, they built strong collaborations between the state aging and disability agencies and the state Medicaid agency; partially or fully operational protocols ensure that individuals seeking LTSS do not have to give the same information more than once.”
Midlife focus groups celebrate access to Medicaid
Midlife anonymous adult focus groups in four states — Kentucky, New Mexico, Ohio, and Pennsylvania — offer poignant testimony in a PPI research report about how Medicaid coverage has affected their lives. They emphasize such benefits as increased peace of mind, access to long postponed medical care, the ability to afford needed prescription drugs and preventive services, and the support necessary to provide care to aging loved ones. “Most study participants either opposed or expressed concern about state or federal policies that create insurmountable barriers to continued access to Medicaid expansion coverage. For example, many said that imposing work requirements on midlife adults creates a high bar in a society where older workers are not valued, making it difficult, if not impossible, for them to find jobs. Others worried that caring for an older relative might not count as an exception to a work requirement. Many felt that premium requirements are acceptable policy as long as they are crafted to reflect what people can reasonably be expected to pay, given their individual circumstances. Finally, some study participants expressed concerns that people, including some policy makers, stigmatize state Medicaid expansion programs and look down on enrollees, instead of seeing them as people who are down on their luck and need help to get by.”
Home Alone Alliance offers CARE Act guidance
Forty-Seven: that’s the number of specific recommendations PPI makes in four new papers emanating from the Home Alone Alliance.* Spawned by the AARP/United Hospital Fund seminal report Home Alone: Family Caregivers Providing Complex Care, the Alliance is conducting numerous follow-up activities related to the CARE act, now law in more than 40 states and territories. The latest additions to the growing reservoir of guidelines to improve patient and family engagement cover communication practices, learning resources, staff training, and electronic health record keeping.

*Family Caregiver Alliance is a founding partner of the Home Alone Alliance.
Researchers point AI tools to dementia diagnoses
While the quest for dementia treatment has so far failed to yield a silver or — for that matter — any kind of bullet, researchers are voicing some optimism about harnessing artificial intelligence (AI) tools to provide earlier diagnoses. “Huge quantities of data reflecting our ability to think and process information are now widely available,” writes The Wall Street Journal’s Shirley S. Wang, “thanks to watches and phones that track movement and heart rate, as well as tablets, computers and virtual assistants that can record the way we type, search the internet and pay bills. Building on previous studies linking biological markers or changes in certain behaviors to early cognitive decline, researchers and companies are now testing whether machine learning can be used to sift through and make better sense of how this complex data fits together, with the goal being to help clinicians detect diseases such as Alzheimer’s sooner. Cognitive changes typically begin years before memory lapses become apparent to individuals or their families. Early detection is difficult because initial changes are subtle, and there aren’t enough dementia experts available to screen people. Yet ‘early detection can be crucial to coming up with the right treatment plan and preserving a patient’s quality of life,’ says Nina Silverberg, director of the Alzheimer’s Disease Research Centers Program at the National Institute on Aging (NIA). ‘Having more and different types of data, coupled with better ways to make sense of it, means there is definitely an opportunity now that we just didn’t have before.’ Researchers have developed ‘behaviorgrams,’ depicting a day in the life of participants across all the signals that register across all of the data-gathering channels; a machine-learning algorithm could analyze the 40-plus data streams to find differences between cognitively healthy and impaired individuals. The factors most closely associated with early dementia included slower typing speed, a wider variance in wake-up times on consecutive days, and the number of messages sent and received on phones and tablets, a sign of social engagement, according to Luca Foschini, co-founder and chief data scientist at San Mateo, Calif.-based Evidation. Research has further shown that speech patterns — such as slower speech, more pauses and shorter phrases — also may have promise in identifying patients with mild cognitive impairment. In a recent study published in Current Alzheimer Research, nearly 8,900 individuals were asked to read aloud short sentences, and machine algorithms were able to distinguish between healthy individuals and those with increasing degrees of cognitive impairment by processing the acoustics of speech. Other studies, such as one published last month in EClinicalMedicine, have analyzed written speech patterns for signs of mental deterioration — like lack of punctuation, misspellings and simplified grammar — and successfully predicted who would go on to develop dementia.”
Researchers laud community health workers
In a New England Journal of Medicine article, New York City hospital-based researchers argue that “investing in community health workers (CHWs) and community-based organizations can help address the social determinants of poor health that disproportionately affect low-income, minority populations. These workers and organizations can help improve material conditions, facilitate access to health care systems, and provide psychosocial support. For more than 15 years, bilingual and multilingual CHW teams at New York–Presbyterian Hospital and the NYU Grossman School of Medicine have delivered culturally and linguistically tailored health coaching, support, and health system navigation services to underserved communities throughout New York City. The 50 CHWs affiliated with the two institutions and with local community-based organizations move between community and clinical environments. Over periods of several months, CHWs partner with individual patients who have or are at risk for chronic diseases, providing them with education, support, and resources to help them manage their own conditions over the long term. When a clinician identifies a patient as ‘nonadherent,’ CHWs are able to provide insight into the social barriers that may warrant a revised clinical assessment and a plan of care that incorporates both clinical and nonclinical needs. Since the onset of COVID-19, CHWs at our institutions have adapted their workflows and conducted more than 9,600 wellness checks over the phone, helped nearly 3,400 people enroll in online patient portals and prepare for upcoming telehealth appointments, and conducted virtual health coaching sessions with more than 600 patients. Through these efforts, workers uncovered and took action to address social determinants of disparities in COVID-19 infections and outcomes, serving as cultural brokers and navigators between community members and fragmented systems of care, and mitigating fear and correcting misinformation in disadvantaged communities.”
Two studies on caregiver support systems
NASHP documents Medicaid caregiver supports
Two recent studies address family caregiver support systems from, first, a U.S. perspective focusing on Medicaid services, and, second, an international perspective focusing on Australian, British, and German approaches to caregiver policies. The Medicaid study, undertaken by the National Academy of State Health Policy (NASHP), emanates from the 2017 RAISE Act; it will help inform the national caregiving strategy that the Act’s Family Caregiving Advisory Council is currently developing. Some states have already implemented innovative strategies that address critical issues in family caregiver support:
  • Colorado, in some circumstances, waives scope of practice laws to enable family caregivers to be paid to provide skilled health-related activities.
  • In Florida, the managed care organization (MCO) that serves children and youth with special health care needs (CYSHCN) provides behavioral health services for family caregivers as a value-added service.
  • Georgia has established a mechanism to identify and deliver individualized training to family caregivers that is based on information collected through the care coordination process.
  • Tennessee requires its MCOs to conduct formal caregiver assessments and plan to meet needs identified in the assessment.

GAO pictures Australian, German, and British caregiver assistance systems
Adding an international dimension to the picture of current caregiver assistance efforts, the U.S. Government Accountability Office (GAO) has issued a comprehensive review of such efforts in Australia, Germany, and the United Kingdom. The document examines policy issues such as flexible work and leave, income support, tax credits and pension support systems. “Experts noted that these efforts could help caregivers maintain workforce attachment, supplement lost income, and save for retirement. As a result, their retirement security could improve. Australia’s and Germany’s policies allow for paid leave (10 days per year of work or instance of caregiving need, respectively), and all three countries allow for unpaid leave though the duration varies. Caregivers can receive income for time spent caregiving. Australia and the U.K. provide direct payments to those who qualify. Germany provides indirect payments, whereby the care recipient receives an allowance, which they can pass on to their caregiver. Experts in all three countries did cite some challenges with caregiver support policies. For example, paid leave is not available to all workers in Germany, such as those who work for small firms. In Australia and the U.K., experts said eligibility requirements for direct payments (e.g., limits on hours worked or earnings) can make it difficult for someone to work outside their caregiving role. In all three countries caregivers may be unaware of available supports.”
Thanksgiving 2020
Amid so much COVID-19 distress, the Thanksgiving-led holiday season nonetheless has given voice to some positive reflections, “blessings in a hard year,” as The Wall Street Journal’s Peggy Noonan put it. “It’s been a fairly gruesome year — pandemic, lockdowns, economic woe, death and illness. We emailed a dozen people, asking what they’d seen, experienced or realized this annus horribilis that left them moved or grateful. There was a lot of surprised gratitude for technology. A subtext emerged, unexpected gifts of the pandemic. Most of all and strikingly there was deep gratitude for the people who work on the ground in America, who keep the country functioning. Almost everyone mentioned personal thanks for grocery-store workers and truckers. I believe the pandemic inched forward a certain cultural shift, a broadened sense of who deserves honor. In some new way the pandemic helped reveal America to itself. Megan McArdle of The Washington Post, who helped nurse her father through his recovery from COVID-19: ‘This year I discovered how courageous people can be in the face of adversity, even grave personal danger. Our institutions may have failed us and our civic trust been savagely corroded, but everywhere you turned there were countless individuals bravely doing what they could for their neighbors.’ Early in the pandemic this column asked political figures to note who was getting us through it, and to take action to help those here illegally. If you can show through pay stub or attesting letter that you worked during the pandemic of 2020, you are thereby granted full citizenship with no fines, fees or penalties. We asked a note be stapled on top: ‘With thanks from your grateful countrymen.’ Mo Rocca of CBS News Sunday Morning, who is especially grateful to delivery people, had a better idea. A new immigration policy ‘damn well better include automatic citizenship, for those who worked the pandemic but it should come with a gift bag. Like a super blingy Oscar gift bag.’”
Recent FCA accomplishments
Learn what Family Caregiver Alliance (FCA) has accomplished during the past fiscal year, including 4,100+ local caregivers served; 1,120+ local caregivers attended an educational event in the community (prior to COVID-19) or by webinar; 1,500+ additional caregivers received timely information and resources; and 2.56 million+ visited FCA’s website fact sheets and CareNav. Please read more and help support FCA here.
Caregiver Resource Centers online classes
The California Caregiver Resource Centers (CRC) serve families and caregivers of adults affected by chronic and debilitating health conditions (FCA is the San Francisco Bay Area CRC). FCA is now hosting a calendar of online classes, workshops, and events compiled from the 11 CRCs and open to family caregivers across the country. To view a list the of CRC offerings in December or download a copy of the flyer, please click here.
Permiso Familiar Pagado en California:
¿Qué es?¿Cómo lo puedes usar?
Eres un cuidador familiar en California con preguntas acerca del Permiso Familiar Pagado? Únete al seminario especial sobre el Permiso Familiar Pagado que será presentado por Family Caregiver Alliance (FCA) y el equipo de California Work & Family Coalition. La presentación cubrirá lo básico del Permiso Familiar Pagado y también las leyes Locales, Estatales y Federales para ayudar a los cuidadores familiares a tomarse el tiempo libre necesario mientras continúan trabajando.
Fecha: Martes 8 de diciembre | 4 p.m. a 5 p.m.
Inscripción: bit.ly/PermisoFamiliar
Descargar folleto: aquí
California Paid Family Leave:
What is it? How can you use it?
Are you a family caregiver in California with questions about Paid Family Leave? Join FCA and the staff of the California Work & Family Coalition for a special webinar on Paid Family Leave for family caregivers. The presentation will cover the basics of Paid Family Leave in addition to local, state, and federal laws that help family caregivers take the time they need while still keeping their jobs.
When: Thursday, December 10 | 12 p.m. to 1 p.m.
Registration: bit.ly/2IQQEGM
Download flyer: here
Dying to Talk with Deepak Chopra and filmmaker Kirsten Johnson
Filmmaker Kirsten Johnson brings her mix of empathy and irreverence to conversations with leading thinkers and practitioners about caregiving, mortality, and what matters most. Acclaimed documentary filmmaker Kirsten Johnson chats with Deepak Chopra in the final session of a 3-part series inspired by the newly released Netflix documentary Dick Johnson is Dead. Deepak, the poet-prophet of integrative medicine, will discuss death contemplation as both a creative and meditative practice that alleviates anxiety and allows one to live fully. Series co-presenters include Family Caregiver Alliance, Museum of the Moving Image, and Rooftop Films.
When: Tuesday, December 8 | 5 p.m. (PT) / 8 p.m. (ET)
Information and Registration: here
Editor: Alan K. Kaplan, (attorney and health policy consultant)
Contributor: Kathleen Kelly (executive director)
Layout: Francesca Pera (communications specialist)

Send your feedback or questions to akkaplan@verizon.net or info@caregiver.org.
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Follow Family Caregiver Alliance / National Center on Caregiving @CaregiverAlly
and Executive Director Kathleen Kelly @KKellyFCA.
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FCA's Connections e-newsletter focuses on issues and information important to family caregivers. The newsletter regularly covers tips, articles, and helpful advice that can assist families with the numerous daily care tasks that caregiving for loved ones presents—including the often overlooked “caring for yourself.” While much of the content can prove helpful to caregivers nationwide, the events included are local to the six-county region of FCA’s Bay Area Caregiver Resource Center.

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