Vol. 20, No. 3
May 8, 2020

“The last time Alexandra Gunnison saw her father, in early March, the coronavirus was in the early, smoldering stages of its wildfire spread across the country. Soon afterward, his nursing home in the suburbs of Washington, D.C., was closed to visitors. Not long after that, her father, Dana Gunnison, 75, was confined to his room, along with all other residents. She’s now one of many who are wondering when, or whether, they will see their elderly loved ones again, as recommendations of social distancing and temporary retirement-home visitor bans are stretching into indefinite periods of separation. A complicating factor is: For the elderly, lengthy periods of isolation to protect them from the virus could be a cure worse than the disease.”
— Samantha Melamed, Philadelphia Inquirer
“If I were to do something different, I would have a nursing home that had enough staff around-the-clock, around all the time,” he said. “I would have a nursing home where everyone had private rooms. I would have a nursing home where there was greater access to the outdoors. In other words, I would have a nursing home funded by a society that puts more emphasis on treating our elders the way they should be treated.”
—Laura Vozzella, The Washington Post
(quoting the medical director at Richmond, Virginia’s Canterbury Rehabilitation &
Healthcare Center where 148 residents became infected with coronavirus and 40 died)
Just a few months ago Americans were getting ready for March madness, umpires’ summons to “play ball,” and myriad festivals, Broadway openings, spring breaks and, not least of all, high school and college graduations. Then, in the proverbial blink of an eye, the world upended as an invader invisible to the human eye managed to blindside mankind.
The images of the coronavirus devastation are many but surely none more poignant than the photo of a nursing home resident trying to connect with her daughter through a nursing home window in Washington state. Such heartrending episodes have become routine. For family caregivers who have previously borne such enormous burdens, the added stress of being unable to provide comfort and hands-on assistance to loved ones makes this crisis especially cruel.
  • COVID-19 ravages nursing homes
  • District Court hands Medicare beneficiaries partial right to appeal hospital ‘observation stay’ decisions
  • Justice in Aging spearheads push for expanded federal relief efforts
  • ACL issues $1billion in grants to mitigate pandemic
COVID-19 ravages nursing homes
For families the responses pertaining to health and caregiving center on the daily tragedies occurring in sealed off care facilities. “It was clear from almost the outset,” writes Long-Term Care Community Coalition Executive Director Richard Mollot, “that the elderly and frail were in the greatest danger from COVID-19. And it was clear to anyone familiar with American nursing homes that they would not be up to the task of protecting their older and infirm residents." As of April 28, Mollot writes, “COVID-19 has killed over 10,000 residents and staff members in nursing homes in 23 states that report fatality data, representing about 27 percent of the COVID-19 deaths in those states, according to the Kaiser Family Foundation. The weaknesses in patient care and oversight at nursing homes that made those deaths more likely were longstanding, widespread and well known. There are 1.3 million people in the country’s roughly 15,000 nursing homes. One-third of Medicare beneficiaries admitted to homes suffer harm within about two weeks of entry, according to a 2014 report from the federal Office of Inspector General. These are the short-term residents, usually for rehabilitation services, for whom homes are paid the most and who are typically most able to articulate their concerns if something is wrong. Where does that leave a majority of residents who are there long-term, most of whom are older, frail and cognitively impaired? These existing problems intensify the risk that residents will suffer and die not only from COVID-19, but also from the erosion of care the pandemic is causing, increasing neglect and abuse in a system that on a good day too often failed to fulfill its duties. In New Jersey, an anonymous tip led the authorities to a nursing home that was storing corpses in a shed. At least 29 of its residents have died from COVID-19 and many more residents and staff members have been infected. Unsurprisingly, this for-profit nursing home has a history of low staffing and citations for substandard infection control. In a Houston-area nursing home, more than 80 residents and staff members have tested positive for the coronavirus. This home also is understaffed and has close to four times the number of substantiated claims than the national average. The tragedy is that government standards for safety and care at homes certified under Medicaid or Medicare (a large majority) are strong. If enforcement of those standards had not been so lax, the devastation we have seen in nursing homes could have been mitigated.
CMS moves to address crisis
  • TELEMEDICINE TAKES CENTER STAGE — The Centers for Medicare and Medicaid Services (CMS) has been responsive in the wake of the pandemic. In late breaking news on April 30 the agency announced the imminent formation of an independent commission to address safety and quality concerns in nursing homes. Since early March CMS has rolled out a series of major administrative measures designed to empower Medicare and Medicaid to provide services in an ever more constricted environment. Telemedicine has been a major focus of this evolving policy. As reported by the Center to Transform Advanced Care (C-TAC) in early April, select new flexibilities include: paying for more than 80 additional services when delivered via telehealth, including emergency department visits, initial nursing facility and discharge visits, and home and domiciliary visits; allowing hospices to provide services to Medicare beneficiaries receiving routine home care (RHC) via telehealth, including through audio-only (i.e. telephone) technologies; new patient virtual check-in services, which were previously only offered to patients who had established a relationship with their doctor; and assessing home health needs and providing certain supports via telehealth. The administration’s actions, observed StatNews’ Lev Facher, “effectively waives many existing restrictions on telehealth." At a news conference, CMS Administrator Seema Verma and President Trump also stressed that the federal government would stop enforcing numerous elements of HIPAA, the health privacy law that, until now, heavily regulated providers seeking to deliver care remotely.
  • CMS ISSUES SNF COVID-19 MEASURES — Among the most impactful CMS COVID-19 actions have been those affecting nursing home residents and their families. In a directive issued March 13 the agency spelled out visitation, staffing, infection control, and numerous other requirements designed to limit the spread of the virus and protect the health of both skilled nursing facility (SNF) residents and their professional caregivers. Justice and Aging has provided a detailed webinar roadmap to the provisions. At the same time, the Center for Medicare Advocacy (CMA) has produced an extensive “advocates guide” addressing beneficiary-related policy changes during the current crisis. Medicare Part A coverage, CMA notes, “is now enlarged for some beneficiaries in traditional Medicare. In light of the pandemic, CMS has waived certain rules for Medicare Part A coverage of SNF stays. Most relevant, residents may be able to extend Medicare coverage even if they used their entire 100-day benefit. In addition, individuals can be admitted to a SNF for a Part A stay without a prior three-day inpatient hospital stay; they can be admitted after a shorter inpatient hospital stay or an observation status hospital stay or even directly from the community if they meet Medicare’s other requirements and need skilled nursing or skilled rehabilitation services. CMS is also allowing SNFs to move residents within and between facilities without giving them advance notice and appeal rights. However, CMS explicitly states that waivers of advance notice and hearing rights apply only when a SNF is moving residents for purposes of cohorting residents, within a facility or between facilities, during the coronavirus pandemic. SNFs must follow advance notice and hearing rights in all other situations, as usual. Nonetheless the Center for Medicare Advocacy is concerned that waiver of resident rights will, in actual practice, extend beyond the permissible justification for cohorting residents.”
  • MEDICARE ADVANTAGE RULES RELAXED AND BENEFITS EXPANDED — With respect to Medicare Advantage (MA) plans, CMA reports, CMS is temporarily relaxing enforcement of rules that prevent MA plans from changing benefits mid-year in connection with the COVID outbreak, and encouraging MA plans to, among other things, expand benefits, add additional benefits and institute “more generous cost-sharing” as long as such measures are “provided uniformly to all similarly situated enrollees.” CMS states that MA plans “may implement additional or expanded benefits that address issues or medical needs raised by the COVID-19 outbreak, such as covering meal delivery or medical transportation services to accommodate the efforts to promote social distancing during the COVID-19 public health emergency.”
  • INTERIM FINAL RULE CODIFIES NEW SNF REQUIREMENTS — The Trump administration’s initial Medicare and Medicaid actions in response to COVID-19 were codified into an Interim Final Rule published on March 31; while its provisions took immediate effect, the rule will remain open to public comment until June 1. A CMS tracking website provides updated information on the status of virus related waivers and flexibility granted states and healthcare providers.
  • NURSING HOME COVID-19 CASUALTIES — All of these developments have come against a drumbeat of devastating reports documenting the extent of the toll COVID-19 is exacting on the elderly and disabled SNF and other institutionalized individuals. Several of the many reports concerning coronavirus casualties can be found in the following: here (The New York Times), here (The Washington Post), here (The New York Times), here (The Washington Post, and here (The New York Times). (Editor’s note: Websites offering links to numerous resources have emerged in the pandemic’s wake, a very comprehensive one produced by the Long Term Care Community Coalition can be found here, and a complementary site here. In addition frequent “alerts” emanating from the Center for Medicare Advocacy contain very detailed analyses of Medicare-related developments.)
  • ADVOCACY GROUPS URGE ADDITIONAL SNF RESIDENTS' PROTECTION — In the face of the mounting mortalities, a growing number of advocacy organizations representing skilled nursing facility (SNF) residents and caregivers has called upon CMS Administrator Verma to expand the Administration’s responses to the threats to their welfare. In their letter the groups recommended actions on SNF disclosure and transparency, staff competency, telecommunication between residents and family and friends, collaborative arrangements for necessary resident transfers, return rights for SNF residents undergoing emergency moves to family homes, and protections against evictions of Medicaid-only eligible nursing home residents.
District Court hands Medicare beneficiaries partial right to appeal hospital ‘observation stay’ decisions
As noted above, a significant element of the emergency CMS initiatives is the suspension of the three-day inpatient requirement for Medicare SNF coverage. The action temporarily moots the long-simmering concerns over the extent to which “observation stay” days in lieu of admission were improperly restricting access to post-acute care. Absent the impact of the coronavirus, beneficiaries had earlier gained some measure of relief in the form of a U.S. District Court decision — nearly 10 years in the making — that beneficiaries whose status is changed from inpatient to observation by their hospital are deprived of their property interest in Medicare Part A coverage. The court, CMA reported, “ordered the Secretary to provide these beneficiaries timely notice of their procedural rights and to allow them to appeal for Medicare Part A coverage of their hospital stays. The court limited its holding to beneficiaries who are changed from inpatient status to observation status in the hospital. In other words, the decision does not apply to beneficiaries who are in observation status for their entire hospitalization, or who are changed from observation to inpatient status. This was based on Judge Michael Shea’s view that only changes from inpatient to observation can be attributed to the application of government rules. Nevertheless, Judge Shea did leave open the possibility of extending appeal rights to a larger group of beneficiaries, determining that ‘the Secretary may provide greater procedural protections than the ones described above, and may provide these protections to a broader class of beneficiaries, provided that the due process rights of the class members are fully protected as set forth above.’ While appeal rights for beneficiaries in observation status are critical and may provide relief for the beneficiaries included in the court’s decision, as long as observation status continues to block access to medically necessary SNF care, more policy advocacy is needed. We continue to ask Congress to pass the Improving Access to Medicare Coverage Act (H.R. 1682/S.753), which would count all time spent in the hospital for purposes of satisfying the three-day inpatient hospital stay requirement for SNF coverage.”
Justice in Aging spearheads push for expanded federal relief efforts
While welcoming the congressional and White House’s massive fiscal and regulatory responses to the pandemic, advocacy groups have mobilized to push for a number of additional measures to protect the health and economic security of older and poor adults. Taking a broad look at the three major COVID-19 acts — the Coronavirus Preparedness and Response Act (H.R. 6074), signed into law March 6, 2020, the Families First Coronavirus Response Act (H.R. 6201), signed into law on March 18, and the CARES Act (H.R. 748) signed into law March 27 — Justice in Aging is urging action on further financial relief, including extension of paid family leave to all family caregivers, increased Medicare and Medicaid appropriations, greater access to HCBS, expanded Medicare enrollment periods, increased access to food assistance and strengthened communication in nursing facilities.
ACL issues $1billion in grants to mitigate pandemic
Quick to utilize the new resources made available by the CARES Act, the Administration for Community Living (ACL) has announced nearly $1 billion in grants to help meet the needs of older adults and people with disabilities, including funding home-delivered meals, care services in the home, respite care and other support to families and caregivers, including information about and referral to supportive services. ACL is continuously updating its website with information on all aspects of the agency’s COVID-related activities.
  • AARP assesses family caregiver role in MLTSS
  • New report from PHI addresses long-term care system’s failure to improve direct care jobs
  • NAM hosts online panel on care interventions affecting dementia sufferers and their caregivers
  • CDC issues call for Alzheimer’s Centers of Excellence applications
AARP assesses family caregiver role in MLTSS
AARP has published a research report detailing the extent to which state managed Medicaid long-term services and supports (MLTSS) delivery systems have contractually recognized the role of family caregivers in utilizing MLTSS programs. Nearly all state programs, the report finds, “include family caregivers in service planning and care coordination (upon the member’s consent) and provide some services and supports (such as respite care or caregiver education and training) targeted to members’ family caregivers; they also include family caregivers in their quality assessment and performance improvement (QAPI) programs and on member advisory committees." A minority of MLTSS programs assess (or reassess) the well-being and support needs of their members’ family caregivers, or allow for family caregivers to be paid as a provider in consumer-directed models of care. Based on the findings, the report recommends: 1) contract language for MLTSS programs should clarify that a comprehensive assessment of the member includes questions directly asked of family caregivers about their own health and well-being, potential strain from juggling a paying job and caregiving, and any services and supports that they may need to be better prepared for their caregiving role; 2) The Centers for Medicare & Medicaid Services should provide guidance to states on promising practices in developing and administering family caregiver assessment tools in MLTSS programs; and 3) all state MLTSS programs should provide ample and meaningful opportunity, including but not limited to member advisory committees, for family caregivers to have a voice in the program to improve care delivery, especially if family caregivers are to be part of the care team.
New report from PHI addresses long-term care system’s failure to improve direct care jobs
From PHI comes a new report, We Can Do Better: How Our Broken Long-Term Care System Undermines Care, that portrays a fractured and scattered long-term care system failing to improve direct care jobs. The report, PHI states, “describes both the shortfalls in long-term care financing and the seismic shifts in the long-term care landscape. ‘The COVID-19 crisis has exposed and heightened the many flaws in our health and long-term care systems, including the barriers facing direct care workers and long-term care providers,’ said Jodi M. Sturgeon, president of PHI, a national research and consulting organization focusing on the direct care workforce." We Can Do Better offers two strategies for transforming long-term care and direct care jobs. “The first strategy is to reform the long-term care financing system so that the direct care workforce is strengthened and sustained, and consumers do not become impoverished when accessing care. The second strategy is to rethink how the long-term care sector is organized and regulated — in order to align workforce-related policies and create better workforce standards.”
NAM hosts online panel on care interventions affecting dementia sufferers and their caregivers
While the pandemic occupies most public discourse, other important health matters have not been totally ignored. Utilizing the tool of Internet-enabled virtual meetings, the National Academy of Medicine hosted a wide-ranging discussion on the state of evidence on care interventions supporting individuals with dementia and their caregivers. The major focus of the virtual meeting was a draft AHRQ-funded review of the evidence by the Minnesota E-based Practice Center. Event materials are available here.
CDC issues call for Alzheimer’s Centers of Excellence applications
In a related development the Centers for Disease for Control (CDC) is soliciting applications for establishment of Public Health Centers of Excellence authorized by the Bold Infrastructure for Alzheimer’s Act (P.L. 115-406). The deadline for applications is May 26, 2020. Complete details and background information are available here.
  • Ethicists ponder COVID-19 rationing guidelines
  • Hospital rules separate parents and daughter after near fatal brain seizure
  • ‘Free’ COVID-19 tests may bring collateral bills
  • COVID-19: Social distancing and loneliness
Ethicists ponder COVID-19 rationing guidelines
“The coronavirus pandemic,” write Ezekiel J. Emanuel, James Phillips, and Govind Persad, “could soon force American physicians to face a tragic challenge — rationing medical care as the number of ill patients overwhelms the supplies, space and staff available in hospitals. The priority should be health care workers; police, firefighters and other emergency workers; and those who keep water, electricity, and other necessary systems functioning, because they can save the lives of others. This primacy should not be abused. For instance, physicians who are not involved in patient care, such as researchers or administrators, should not get special treatment. The goal should be saving as many people as possible, and treating those who are likely to get the greatest benefit from care. This will mean that treatment cannot be allocated on a first-come-first-served basis, as it normally is. Traditionally, patients on ventilators are not displaced for other patients, and later arriving patients can be turned away in a shortage. But in the coronavirus pandemic, business as usual would make patients with a good prognosis if treated suffer for want of treatment, while patients who arrive earlier but have a grave, or even hopeless, prognosis would receive treatment. Under that standard of care, more lives would be lost. In order to best steward the resources available, arriving at the hospital first would no longer guarantee that one would receive lifesaving treatment over another patient. All patients deserve maximum treatment. But the tragedy of scarcity in a pandemic is that some will go without conventional treatment, no matter what. The goal of maximizing benefits and survival for the many should take priority over the goal of treating the patient who happened to get sick and come to the hospital first. Assessing and reassessing who is most likely to survive — as hard as it is — is what ethics requires.”
Hospital rules separate parents and daughter after near fatal brain seizure
“Of all the ways the coronavirus pandemic has undermined the conventions of normal life,” writes The New York Times Katie Hafner, “perhaps none is as cruel as the separation of seriously ill patients and their loved ones, now mandated at hospitals around the world. Thirty-two-year-old Brittany Sanchez, who suffered a seizure and collapsed, eventually found herself at UC San Francisco Medical Center awaiting a major neurological procedure. UCSF was in lockdown, and Sanchez’s parents were not allowed in the hospital. The surgery would be complex and dangerous. ‘There was a reasonable chance she was going to have a problem,’ said Dr. Mitchel Berger, the neurosurgeon who performed the procedure. Dr. Berger tried and failed to persuade his hospital to make an exception to the no-visitor rule. Ms. Sanchez’s father was beside himself. The night before the surgery, he sent Dr. Berger a text. ‘You will have my daughter Brittany’s life in your hands tomorrow,’ he wrote. ‘I expect you to treat her as if she were your own daughter. I will never forgive myself that I was not able to hold her hand through this. Bring her back home to me whole.’ The surgery lasted nearly seven hours. As soon as he was finished, Dr. Berger went to find Brittany's parents, who were waiting outside the hospital. From six feet away, he told them the surgery had gone well, and apologized again for being unable to allow them in. ‘They said they knew it wasn’t my fault, but that I just couldn’t imagine what it would be like to be in that situation,’ he said. ‘And they’re right. I couldn’t imagine it.’”
Some reporters’ vignettes in the time of COVID-19
  • CCRC RESIDENTS STRUGGLE WITH SOCIAL DISTANCING — Continuing Care Retirement Communities (CCRCs) promise a life of carefree activity, communal interaction and services through the continuum of care from independent living to nursing home needs. But, writes Kaiser Health News’ Judith Graham, “Across the country, seniors’ lives are being upended as continuing care retirement communities take aggressive steps to protect residents from COVID-19. Since mid-March, aided by guidance from the Centers for Disease Control and Prevention, many places have instituted strict policies. Most often, group activities are being canceled. Nonessential visitors aren’t allowed. Dining rooms have closed, and meals are being delivered to people in their rooms. Staffers are screened (this includes a temperature check) when they enter and exit campuses. And all residents, including seniors in independent living, are being asked to stay in their rooms most of the time. Within the communities, threats other than COVID-19 abound. Without regular contact with other people, older adults can become lonely or depressed. A change in someone’s health status that might have been noticed if they didn’t show up for dinner can now go unobserved. Without stimulation, motivation and cognition can decline. Communities have responded by having staff check in regularly with vulnerable residents, offering to arrange video visits with family members, organizing Zoom interest groups for residents and creating programming, such as exercise sessions, broadcast over closed-circuit, in-house television stations. ‘Their efforts really help to smooth out what is an incredibly difficult time here,’ said independent living resident Benita Ross, 71. ‘There’s intense anxiety that your family or friends may get sick and die,’ she said. ‘It’s terrifying, and there’s not a damn thing you can do about it.’”
  • NEW YORK CITY SENIORS SUFFER CLOSURE OF THEIR SENIOR CENTERS — “In New York City for 30,000 elders each day,” writes The New York Times John Leland, “senior centers have been an outlet from their homes. And now, by order of the mayor, all on-site activities are closed, though the centers can still provide meals to go. It is a terrible irony of the virus: that for older adults, steps to prevent the spread of COVID-19 increase the risks of social isolation, which carries its own devastating health effects. ‘The activities and the hot meals, senior centers provide structure in lives that may not otherwise have it,’ said Ruth Finkelstein, executive director of the Brookdale Center for Healthy Aging at Hunter College. ‘The way we remember to do something is that it’s tied to something else,’ Ms. Finkelstein said. ‘When that gets disrupted, it disrupts when we eat, which disrupts our sleep, which disrupts whether we take our medications. We see this with the way older people experience delirium in the hospital after just a few days of disruption. I’m not saying the current disruption will come to that, but once the disruption starts, it’s very difficult to dam it.’ Lujira Cooper, 72, goes three or four days a week to the Edie Windsor SAGE Center in Midtown Manhattan, the first full-time senior center for LGBT older adults. The center’s closing was a reversal of the common aging experience: She was staying healthy but the social world around her was unraveling. Also, she missed the arguing and the birthday celebrations — hers was scheduled for later this month. ‘I can clean my house and work on a book I’m supposed to be writing,’ she said, ‘but it’s the missing of talking to people in another setting. I don’t mind being by myself. I mind being forced to be by myself. You can’t go anywhere, you can’t be around people.’ She wondered whether, when the virus receded, people would hug again, or if the practice would disappear. She felt a loss of herself as much as other people, she said. ‘When you can’t be around people altogether, and people are afraid of catching something, it creates a self-imposed prison.’”
  • SNF ‘SPRING FLING’ BRINGS FAMILIES ‘TOGETHER’ ACROSS GLASS BARRIER — “Anna Epstein,” writes The Washington Post’s Theresa Vargas, “received an email that left her sobbing. Her mother’s assisted living center, she learned, had figured out a way for families to safely visit. Before that email came, Epstein hadn’t seen her mother face-to-face for weeks. Which is what makes what happened there recently so meaningful. In an effort to give residents and their relatives a way to form new memories, the staff turned the two glass doors between a dining room and an outdoor courtyard into a meeting space. They decorated the area with paper flowers and green vines and placed comfy chairs on each side of those doors. Residents wouldn’t be able to embrace their visitors, but at least they could see them. They could touch the glass and know that only a sliver of space separated them from their spouses, siblings, children and grandchildren. The staff called the event Spring Fling. Really, though, they could have called it anything and Epstein would have shown up. Chloe Burke, the center’s executive director, said the idea for the visits grew out of a staff meeting. A staff member noted that they had all been so focused on the logistics of keeping residents safe that it would be nice to do something that went beyond that. After they sent an email asking families to let them know if they would be interested in scheduling a through-the-door visit, they received more than 20 responses in the first 30 minutes.”
  • CUTOFF 92-YEAR-OLD REHAB PATIENT GETS TO GO HOME — “His daughters were not at his bedside, holding his hand. His sons were not making him smile with wisecracks about the institutional setting. His grandchildren were not cheering him up with reports from the distant world of youth. Joseph Trinity’s family members,” writes The New York Times Dan Barry, “were there one day, and then they were not, for the same reason much of the world is trying to suppress the human desire to be with one another: the coronavirus. Mr. Trinity had found himself in a New Jersey rehabilitation facility that, like most health care institutions across the country, had declared a no-visitor policy to stem contagion. But he is 92, and in fragile health; family sustains him. Mr. Trinity begged by telephone to be rescued, his words weak, anxious, sometimes disconnected. His children faced a heartbreaking dilemma. The five Trinity children talked it through by conference call but they already knew there was really only one answer. They arranged for an ambulance and soon a wheeled-out Mr. Trinity was squinting in the daylight. ‘I’m so happy,’ he said from the gurney. ‘This is the second-happiest day of my life.’ The ambulance wended its way through a landscape thoroughly altered from the one Mr. Trinity had left behind less than three weeks earlier. Past the West Essex Y.M.C.A., closed, and the Livingston Public Library, closed. Then it drove into his hometown, where the schools are closed and the playgrounds padlocked. Finally, it pulled up to his own home, where six family members were waiting. ‘Welcome home!’ someone called out. ‘Thank you, thank you,’ he said, failing not to cry.” (Dan Barry is Joseph Trinity’s son-in-law.)
  • HOME HEALTH AIDES QUELL FEARS TO HELP THE HOMEBOUND — And what about home health aides in the time of COVID-19? “All day, most days, for $10 an hour,” writes The Washington Post’s Peter Jamison, “Marley Brownlee comes and goes from the homes of the old and the weak. She has almost none of the equipment that could protect her vulnerable clients — or herself — from the deadly virus that has transformed life across the United States. No masks, goggles or gown. She takes what precautions she can, using gloves, hand sanitizer and disinfectant wipes. Her hands are raw from washing, and last week, she considered spraying herself down with Lysol between appointments. The home-care industry lacks the prominence and cachet of American hospitals, especially its most celebrated medical centers. Yet home care has grown into a pillar of the medical and senior-care systems, serving both older clients who wish to avoid nursing homes — now more than ever — and people with disabilities, who in previous decades were often clustered in large institutions. Unprotected as she ventures from house to house, Brownlee now comes into her home after work through her basement, removing her work clothes before joining the rest of her family. She is scared. So are her clients. ‘I don’t want my clients to get sick, and I don’t want to get my children sick,’ Brownlee said. ‘It’s, like, a battle. Do I stay home? Do I go to work? I know that my clients depend on us, so I kind of just have to bite the bullet and take what precautions I can.’”
‘Free’ COVID-19 tests may bring collateral bills
While extended testing capability for coronavirus is a top item on many to-do lists,” writes The New York Times Elizabeth Rosenthal and Emmarie Huetteman, “there’s an attendant risk aside from whatever the results may show: hidden costs for ER visits and other fees could cause people thousands of dollars. On March 18, President Trump signed a law intended to ensure that Americans could be tested for the coronavirus free, whether they have insurance or not. (He had also announced that health insurers have agreed to waive patient co-payments for treatment of the disease.) But their published policies vary widely and leave countless ways for patients to get stuck. While insurers had indeed agreed to cover the full cost of diagnostic coronavirus tests, that may well prove illusory: The test may be free but a visit to the E.R. to get it is not. Some Senators had wanted to put a provision in the coronavirus bill to protect patients from surprise out-of-network billing — either a broad clause or one specifically related to coronavirus care. Lobbyists for hospitals, physician staffing firms and air ambulances apparently helped ensure it stayed out of the final version. Even without an E.R. visit, there are perilous billing risks. Not all hospitals and labs are capable of performing the test. And what if my in-network doctor sends my coronavirus test to an out-of-network lab? Before the pandemic, the Kaiser Health News-NPR Bill of the Month Project produced a feature about Alexa Kasdan, a New Yorker with a head cold, whose throat swab was sent to an out-of-network lab that billed more than $28,000 for testing. Even patients who do not contract the coronavirus are at a higher risk of incurring a surprise medical bill during the current crisis, when an unrelated health emergency could land you in an unfamiliar, out-of-network hospital because your hospital is too full with COVID-19 patients. The coronavirus bills passed so far — and those on the table — offer inadequate protection from a system primed to bill patients for all kinds of costs. The Families First Coronavirus Response Act says that the test and its related charges will be covered with no patient charge only to the extent that they are related to administering the test or evaluating whether a patient needs it.”
COVID-19: Social distancing and loneliness
From the New Yorker’s Jill Lepore, the last words, on loneliness: “Before modern times, very few human beings lived alone. Slowly, beginning not much more than a century ago, that changed. In the United States, more than one in four people now lives alone; in some parts of the country, especially big cities, that percentage is much higher. You can live alone without being lonely, and you can be lonely without living alone, but the two are closely tied together, which makes lockdowns, sheltering in place, that much harder to bear. Loneliness, it seems unnecessary to say, is terrible for your health. In 2017 and 2018, the former U.S. Surgeon General Vivek H. Murthy declared an ‘epidemic of loneliness,’ and the U.K. appointed a Minister of Loneliness. Living alone, while common in the United States, is more common in many other parts of the world, including Scandinavia, Japan, Germany, France, the U.K., Australia, and Canada, and it’s on the rise in China, India, and Brazil. Living alone works best in nations with strong social supports. It works worst in places like the United States. It is best to have not only an Internet but a social safety net. Then the great, global confinement began: enforced isolation, social distancing, shutdowns, lockdowns, a human but inhuman zoological garden. Zoom is better than nothing. But for how long? And what about the moment your connection crashes: the panic, the last tie severed? It is a terrible, frightful experiment, a test of the human capacity to bear loneliness. Do you pull out your hair? Do you dash yourself against the walls of your cage? Do you, locked inside, thrash and cry and moan? Sometimes, rarely, or never? More today than yesterday?”
Upcoming Online Conversation with Diane E. Meier, MD: Palliative Care on the Front Lines of COVID-19
Click to download PDF flyer to print or share via email
Please join us for a free webinar on palliative care and COVID-19 on Thursday, May 14.

Dr. Diane E. Meier, CEO, Center to Advance Palliative Care Icahn School of Medicine at Mount Sinai, NYC, will talk about medical decision-making for those in palliative care, how to better communicate with health professionals at this time, and how COVID-19 has shaped future palliative care recommendations.

This webinar will be moderated by Kathleen Kelly, MPA, executive director of Family Caregiver Alliance (caregiver.org).

When: Thursday, May, 14 | 11 a.m. to 12 noon (PT); 2 to 3 p.m. (ET)
Register: Click here
Free Online Resource Helps Organizations that Support Dementia Caregivers
Newly launched  Best Practice Caregiving (BPC) is web-based database developed for organizations that serve family and friend caregivers of those living with dementia. With more than 40 proven, vetted dementia caregiving programs, BPC is a rich resource for organizations looking to identify, compare and adopt best-fit programs.
Read how one BPC program at UCLA has improved the lives of its more than 2,000 program participants  here  and  here . And don’t miss this round-up of  12 BPC programs  that can be delivered remotely during these times of quarantine.

Best Practice Caregiving is a collaboration between FCA,  Benjamin Rose Institute on Aging, and the The Gerontological Society of America, and was funded by The John A. Hartford Foundation , Archstone Foundation and RFF Foundation for Aging .

To learn more about this exciting new resource, visit  bpc.caregiver.org and check out a recording of a webinar featuring leaders from FCA, Benjamin Rose Institute on Aging and The John A. Hartford Foundation.  Click here. Please note that registration is required to view the recording.
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Are You Receiving Connections?

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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101 Montgomery Street, | Suite 2150 | San Francisco, CA 94104
(800) 445-8106 | www.caregiver.org

Editor: Alan K. Kaplan, (attorney and health policy consultant)
Contributor: Kathleen Kelly (executive director)
Layout: Francesca Pera (communications specialist)

Send your feedback and/or questions to akkaplan@verizon.net or policy_digest@caregiver.org .
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