$400 billion over the next eight years: That is what Pres. Biden wants to spend to expand caregiving services for the surging U.S. aging population. “Part of the Administration’s American Jobs Plan, the proposed amount,” writes The Washington Post’s Jeff Stein, “amounts to roughly a fifth of the overall price tag of Biden’s plan, the first of two related economic proposals expected from the White House. The inclusion of home care represents a significant commitment, which faced a large — and, at times, competing — set of policy demands from unions, advocates and congressional Democrats, among other allies. The prominence of the proposed home-care expansion shows how the issue has attracted the attention of a growing number of Democrats and influential groups. It also reflects the growing alarm by some experts about the nation’s inability to absorb the enormous growth in its elderly population — a challenge that threatens to strain an already limited workforce of caregivers; complicate the retirements of millions of people; and force many children, particularly daughters, out of the labor market to care for their parents.”

“White House officials,” Stein reported, “have also stressed they aim to improve the low pay and working conditions for caretakers. In 2018, the last year for which data are available, the United States spent about $130 billion on long-term care through Medicaid, with about $71 billion of that going to home care, according to the Department of Health and Human Services. Biden’s plan amounts to as much as $50 billion a year for home care in additional spending, close to doubling the existing amount. (Still) many experts in long-term care worry even the hefty price tag is not sufficient to prepare the nation — and particularly middle-class families — for the coming boom in the number of elderly Americans.”

Biden’s proposal, writes The Nation’s John Nichols, “embraces the idea of ‘care infrastructure,’ as it seeks to solidify the infrastructure of our care economy by creating jobs and raising wages and benefits for essential home care workers. ‘This represents remarkable progress,’ says Ai-jen Poo, the cofounder and executive director of the National Domestic Workers Alliance. ‘Investing in home and community-based services and the care workforce will help make these jobs good jobs for the first time, and secure services for people who rely on them. Each year, about four million children are born and four million people turn 65. Despite the growing demand for systems to care for children, people with disabilities and older adults so that parents and adult family members can work and support their families, the U.S. has one of the weakest systems of support among advanced economies and COVID has brought our patchwork systems to a breaking point.’”

The Administration’s jobs plan came on the heels of enactment of the $2 trillion American Rescue Plan Act that also included some important provisions related to long-term care. As summarized by the National Consumer Voice for Quality Long Term Care, the law directs $450 million to support care in skilled nursing facilities and $10 million for long-term care ombudsman programs. Also included is additional funding support to states for Medicaid Home and Community-Based Services (HCBS) and increased funding for COVID-19 vaccines, testing, and personal protective equipment. The $450 million directed toward nursing home care includes $200 million to Quality Improvement Organizations to provide nursing homes with “infection control and vaccination uptake support” to prevent or mitigate COVID-19, as well as $250 million to states to fund strike teams for resident and employee safety. The Act seeks to increase Medicaid funded Home and Community-Based Services by increasing the federal financial match by 10% for these programs. “‘This would be a gamechanger in terms of service delivery for people with disabilities and aging adults,’ Nicole Jorwic, senior director of public policy at The Arc, told Modern Healthcare’s Jessie Hellmann and Ginger Christ. ‘It’s frankly a long overdue recognition of these home and community-based services — the fact that they're the alternative to these more dangerous, large congregate settings, and this is a recognition we need to invest and modernize the programs that fund these services.’ Advocates, write Hellmann and Christ, have pushed for funding to be tied to specific conditions, like increased pay for workers, who are disproportionately low-wage women of color. Eventually, they hope, Congress will make Medicaid coverage of HCBS mandatory, with a baseline of required benefits being covered from state to state and no more waiting lists or caps on the number of people covered.”

With the Biden administration sounding the call to expand the HCBS system, several legislators have, in fact, released a discussion draft of a bill to establish a baseline criteria for the delivery of HCBS across the country and to make those foundational services an entitlement under Medicaid. “Creating a minimum set of services, that states can enhance, and requiring HCBS as part of Medicaid for those who are eligible, will help states create a network of providers and workers to deliver critical services and support. It will also eliminate the long waiting lists for services experienced by many eligible people in an estimated 41 states across the country.” Comments and suggestions addressed to HCBSComments@aging.senate.gov are invited by April 26.

Not least among the many signs of a new power structure in the White House and Congress are the administration’s actions concerning Medicaid. “Florida and the 11 other states,” writes The Washington Post’s Amy Goldstein, “most of them across the South, are the intended audience for a few paragraphs deep in the 630-page American Rescue Plan. The legislation offers a novel and generous financial incentive to states if they agree to open Medicaid to more poor people and some in the working class. Nationwide expansion was to have started in 2014. But two years before then, the Supreme Court ruled in 2012 that, while the ACA could stand, each state would be free to decide whether to expand Medicaid. Since then, 32 states have passed expansion laws. Four more states — all Republican-leaning — expanded after voters approved ballot initiatives, overriding years of opposition by their governors or legislatures. Missouri and Oklahoma passed ballot initiatives last summer for expansions that begin in July. But some resistant state officials have not changed their posture. The new law takes a different tack than previous Democratic expansion proposals. It sweetens the terms for states by adding extra federal aid — 5 percent — for each person in the original part of a state’s Medicaid program, rather than the smaller number who would be included in an expansion. The extra money would last two years from whenever a state broadened its safety net. It would more than offset the increased cost for the state’s 10 percent share of expanding, according to an analysis by the Kaiser Family Foundation. If all 12 states expanded, the money would add up to an estimated $16.4 billion over two years — far more than the states’ share of the expansion, an estimated $6.8 billion if eligible people enrolled. ‘Our goal in crafting this was to create an offer that was too good to refuse,’ said Rep. Frank Pallone Jr. (D-N.J.), chairman of the House Energy and Commerce Committee. ‘The pandemic has heightened the urgent need to extend coverage to the millions of Americans who don’t have health insurance.’”

As The Wall Street Journal’s Stephanie Armour observes, however, while the Biden Administration is looking to expand Medicaid following the Trump administration’s initiatives to curtail the program’s spending, “the push to reboot Medicaid could falter because the new administration is also rescinding Trump-era policies, such as Medicaid work requirements, which GOP-led states have sought in exchange for expansion. The Biden administration has now told Arkansas and New Hampshire that it will be withdrawing federal approval for their work requirements, which generally mandate that beneficiaries log 20 or more hours on a job, look for work, perform community service or take educational classes to get their Medicaid benefits. Both states expanded Medicaid but added the requirements for some beneficiaries.”

As more in-person physician office visits become feasible and available, the future role of telehealth services remains open to debate. The Medicare Payment Advisory Committee (MedPAC) has recommended that Congress, as reported by Medscape’s Kerry Dooley Young, “consider temporarily continuing some of the telehealth expansions for a limited time, such as 1 to 2 years beyond the period the federal government deems a public health emergency. ‘This approach would allow the Centers for Medicare & Medicaid Services (CMS) more time to gather evidence about how well the telehealth approach is working,’ MedPAC wrote. MedPAC also suggested that after the end of the public health emergency, Medicare should return to paying the physician fee schedule’s facility rate for telehealth services and collect data on the cost of providing those services. In addition, clinicians should not be allowed to reduce or waive costs for people enrolled in Medicare for telehealth services after the public health emergency. On a call with reporters, MedPAC Executive Director James E. Mathews, PhD, described these suggestions as ‘taking a measured approach. We’re not making a formal recommendation here. This is more of a statement of the commission’s thinking that the expansions that have been implemented should be allowed to continue for some period of time after the end of the public health emergency.’ In its March 2021 report, MedPAC also urged CMS to implement safeguards to protect the Medicare program and its beneficiaries from unnecessary spending and potential fraud related to telehealth. ‘Telehealth technology might make it easier to carry out fraud on a large scale because clinicians employed by fraudulent telehealth companies can interact with many beneficiaries from many parts of the country in a short amount of time. Recent Department of Justice charges have alleged that executives of telemedicine firms allegedly paid doctors and nurse practitioners to order unnecessary durable medical equipment, genetic and other diagnostic testing, and pain medications, either without any patient interaction or with only a brief telephone conversation with patients they had never met or seen.’”

Readers interested in exploring policy issues related to telehealth can view an online hearing held March 2 by the House Energy and Commerce Health Subcommittee here.

If telehealth expansion leads to a permanent shift from office to video stream for primary care, some new Medicare payment policies are promising to similarly shake up allowable sites for invasive procedures. As The Washington Post’s Susan Jaffe reports, “one of the Trump administration’s cost-saving moves, thus far still in effect, will cut payments to hospitals for some surgical interventions. For years, the Centers for Medicare and Medicaid Services (CMS) classified 1,740 surgeries and other services so risky for older adults that Medicare would pay for them only when these adults were admitted to the hospital as inpatients. Under the new rule, the agency is beginning to phase out that requirement. On Jan. 1, 266 shoulder, spine and other musculoskeletal surgeries were crossed off what is called the ‘inpatient-only list.’ By the end of 2023, the list — which includes a variety of complicated procedures including brain and heart operations — is scheduled to be gone.”

“CMS officials said the change was designed to give patients and doctors more options and help lower costs by promoting more competition among hospitals and independent ambulatory surgical centers. But they forgot one thing. While removing the surgeries from the inpatient-only list, the government did not approve them to be performed anywhere else. So patients will still have to get the care at hospitals. But because the procedures have been reclassified, patients who have them in the hospital don’t have to be considered admitted patients. Instead, they can receive services on an outpatient basis. CMS pays hospitals less for care provided to beneficiaries who are outpatients, so the new policy means the agency can pay less than it did last year for the same surgery at the same hospital and Medicare outpatients will usually pick up a bigger part of the tab. ‘The impetus for this is for Medicare to save money,’ said James Huddleston, a professor of orthopedic surgery at the Stanford University Medical Center. ‘The oldest trick in the book is to say the patients don’t need to be cared for in an expensive hospital setting. But since seniors will still have to go to the hospital, it’s sort of a distinction without a difference.’ For some patients, it could mean higher out-of-pocket charges for the care. ‘This is not about a different care setting, or giving more choice to providers,’ said Judith Stein, executive director of the Center for Medicare Advocacy. ‘It’s about Medicare billing practices that will further confuse hospital patients.’ Critics are hoping Biden’s CMS will rescind the new policy. ‘The decision ought to be made by the surgeons in consultation with their patients,’ said Joseph Bosco, a vice chair of NYU Langone Health’s Department of Orthopedic Surgery and president of the American Academy of Orthopaedic Surgeons.”

Meanwhile, writes Modern Healthcare’s Harris Meyer, a separate CMS payment change, likely to remain in effect, “has spurred a rush by ambulatory surgery companies (ASCs), independent cardiology groups, some hospitals, private equity investors and insurers to enter into or expand their ambulatory cardiovascular business. In January, Medicare started paying ASCs for six types of percutaneous coronary intervention, or PCI, procedures, also known as angioplasties, which it previously paid for only in inpatient or hospital outpatient settings. The CMS reimburses ASCs about 40% less for these services than it pays for hospital outpatient care. The CMS rule allowing ASCs to perform these lucrative PCI procedures, finalized last November, is widely expected to speed the migration of cardiovascular procedures out of hospitals and into the ambulatory sites. In addition, the agency has asked for public comment on whether it should pay for 14 more codes for higher-risk coronary intervention procedures in ASCs. If a significant share of these procedures move out of the hospital as expected, hospitals will be hard hit financially. That blow would come on top of the likely migration of many other lucrative procedures to ASCs, including total knee replacements, which the CMS also approved in ASCs starting Jan. 1.”

April 28 is the date for the next online gathering of the Raise Act’s Family Caregiving Advisory Council. Full details are available here.

Heeding the growing calls for relaxation of the strict long-term care visitation rules put in place when the coronavirus pandemic struck, CMS has issued revised guidance significantly expanding access, both indoors and outdoors. Taking note of the successful rollout of the COVID-19 vaccine in nursing homes, CMS declared that “facilities should allow responsible indoor visitation at all times and for all residents, regardless of vaccination status of the resident, or visitor, subject to some limiting scenarios. The updated guidance also emphasizes that ‘compassionate care’ visits should be allowed at all times, regardless of a resident’s vaccination status, the county’s COVID-19 positivity rate, or an outbreak. Compassionate care visits include visits for a resident whose health has sharply declined or is experiencing a significant change in circumstances. CMS continues to recommend facilities, residents, and families adhere to the core principles of COVID-19 infection control, including maintaining physical distancing and conducting visits outdoors whenever possible. ‘CMS recognizes the psychological, emotional and physical toll that prolonged isolation and separation from family have taken on nursing home residents, and their families,’ said Dr. Lee Fleisher, CMS Chief Medical Officer and Director of CMS’ Center for Clinical Standards and Quality. ‘That is why, now that millions of vaccines have been administered to nursing home residents and staff, and the number of COVID cases in nursing homes has dropped significantly, CMS is updating its visitation guidance to bring more families together safely.’” (A very helpful summary of the new guidance has been published by the National Consumer Voice for Quality Long Term Care)

The COVID-19 outbreak in long-term care facilities spread its destruction widely and indiscriminately but, as vaccination lowers infection rates, analysis of the factors contributing to better quality and residents’ safety continues to focus on SNFs’ high staff turnover. A new study, reports Reed Abelson, “takes a comprehensive look at the turnover rates in 15,645 nursing homes across the country, accounting for nearly all of the facilities certified by the federal government. UCLA and Harvard researchers found the average annual rate was 128 percent, with some facilities experiencing turnover that exceeded 300 percent. ‘It was really staggering,’ said David Grabowski, a professor of health care policy at Harvard Medical School and one of the study’s authors. Researchers pointed to the findings to urge Medicare to publish the turnover rates at individual nursing home sites, as a way of putting a spotlight on substandard conditions and pressuring owners to make improvements. Nursing-home owners blame inadequate reimbursement from Medicaid, the federal-state program for elderly skilled nursing care. ‘Workforce recruitment and retention is among the most pressing challenges confronting long-term care providers, and we have been calling for help for years,’ Dr. David Gifford, the chief medical officer for the American Health Care Association and National Center for Assisted Living. Registered nurses, who are the most skilled workers, had the highest rates of turnover, and turnover varied widely across facilities. Among the states with the highest rates were Oklahoma, Montana and Kansas. Facilities that had low-star ratings on Medicare’s website comparing nursing homes had the highest median turnover, and nursing homes with high ratings had the lowest turnover. Turnover was also higher at for-profit institutions, owned by chains and those serving Medicaid beneficiaries. Melissa Unger, the executive director at S.E.I.U. 503, an Oregon division of the Service Employees International Union, said nurses struggle to work at facilities with too few staff members to adequately care for the residents. ‘You’re doing all of that for crappy benefits and low pay.’ In addition to making the turnover rates available to the public, the authors point to a number of steps lawmakers could take to improve retention. Medicare could incorporate turnover into its star-rating system, and Medicare and Medicaid could reward nursing homes with higher rates if they had lower turnover. ‘If we’re going to change nursing homes, we have to start with the staff,’ Dr. Grabowski said.”

Making things worse, according to a New York Times investigative report, the system in place to provide families with information to assess nursing home quality is “broken.” “Twelve years ago,” write Jessica Silver-Greenberg and Robert Gebeloff, “the U.S. government introduced a powerful new tool to help people make a wrenching decision: which nursing home to choose for loved ones at their most vulnerable. Using a simple star rating — one being the worst, five the best — the system promised to distill reams of information and transform an emotional process into one based on objective, government-blessed metrics. The star system quickly became ubiquitous, a popular way for consumers to educate themselves and for nursing homes to attract new customers. During the coronavirus pandemic, with many locked-down homes unavailable for prospective residents or their families to see firsthand, the ratings seemed indispensable. But, despite years of warnings, the system provided a badly distorted picture of the quality of care at the nation’s nursing homes. Many relied on sleight-of-hand maneuvers to improve their ratings and hide shortcomings that contributed to the damage when the pandemic struck. More than 130,000 nursing-home residents have died of COVID-19, and The Times’s analysis found that people at five-star facilities were roughly as likely to die of the disease as those at one-star homes. Among The Times’s findings:

On March 17 long-term care staffing and ownership issues took center stage at a Senate Finance Committee hearing. “The terrible impact of COVID-19 on seniors in long-term care, said Chairman Ron Wyden in his opening remarks, “isn’t a red state or a blue state issue, it is a nationwide tragedy. If you look at the 10 states where nursing homes have been hit the hardest, it’s five Republican-led startes and five Democratic-led states.” In her testimony Certified Nursing Assistant Adelina Ramos told the committee that “Between April and June of last year, nursing homes in Rhode Island received over $50 million dollars in state and federal funding in response to the COVID-19 crisis. That was on top of a federal stimulus payment of $2,500 per nursing home bed plus $50,000 per facility — almost $26 million. Still, Rhode Island has one of the worst records in the nation for COVID-19-related nursing home deaths — 6 in 10 COVID-19 deaths were in long-term care settings. Where did all that money go? How was this allowed to happen? If you ask any CNA what their top issue is on the job, it’s low wages, unsafe staffing and poor job quality. They are linked together. ‘I feel a calling to do this work and care for others. But it is hard to do this job when you can’t pay your bills, put dinner on the table or afford to take your child to the doctor. Some of us have to work two or three jobs, just

to meet our basic needs. And all this is made harder by the fact that because of short staffing, we don’t have the time to spend with residents when they need us. One of my hardest days during COVID-19 was when one of my patients was slipping away and wanted me to sit at her bedside but I couldn’t stay because there were twenty other residents who also needed me. This is the cycle we need to break.’”

In New York State, where the Cuomo Administration has been accused of “cooking the books” on COVID-19 nursing home deaths, the tide appears to be turning with respect to the heated issue of broad legal protections for healthcare providers. Legislation nixing such protection, reports Modern Healthcare’s Maya Kaufman, “stands ready to become law after receiving the approval of veto-proof majorities in the Assembly and state Senate. The vote drew the condemnation of healthcare and nursing home industry representatives, who called the move premature. ‘What if the variants do something unexpected? What happens if something goes awry in the near future?’ asked Southern New York Association President Neil Heyman, whose group represents long-term-care facilities in New York City, Long Island and Westchester. ‘I think people should still be protected until we reach herd immunity and this thing is gone.’ The rollback picked up steam, however, after a January report by Attorney General Letitia James found that the state had under-reported the COVID-19 deaths of nursing home residents by as much as 50%. In that report, James called on the legislature to eliminate the immunity provisions. ‘While it is reasonable to provide some protections for healthcare workers making impossible healthcare decisions in good faith during an unprecedented public health crisis, it would never be appropriate or just for nursing home owners to be given blanket immunity for causing harm to residents.’”

As part of its ongoing study of “Quality of Care in Nursing Homes,” the National Academy of Medicine will host a public webinar April 13 at 2 p.m. EDT. The discussion will explore a range of topics related to innovation in nursing home care and potential best practices for improving quality. Further information and registration are available here.

The Alzheimer’s Association has published its annual report on the disease’s status, including extensive data on racial and ethnic perspectives. “The report,” writes UPI’s Paula Spencer Scott, “stresses that dementia dominates caregiving. Nearly half of all those who provide unpaid help to an older adult do so for someone with a form of dementia, including Alzheimer’s. Alzheimer’s is especially a women’s disease. Two-thirds of Americans over 65 with Alzheimer’s are women. And two-thirds of dementia caregivers are women. Over half of Alzheimer’s caregivers are providing assistance to a parent or in-law. One in four are sandwich-generation caregivers, tending to both parents and children. Thirty percent of dementia caregivers are over 65. The Alzheimer’s caregiving burden varies, however. Hispanic, Black and Asian American caregivers of people with dementia indicate greater care demands, less outside help or use of formal services and greater depression than white caregivers. One aspect of Alzheimer’s does seem colorblind: while nearly two in three caregivers across all racial and ethnic groups describe caregiving as ‘stressful.’ nearly all (92%) say it’s rewarding, too. With respect to racial and ethnic dimensions, ‘We've got to do a better job of understanding the backgrounds and cultures of different under-represented ethnic populations to make them part of our great momentum with Alzheimer’s,’ says Carl V. Hill, the Alzheimer’s Association’s chief diversity, equity and inclusion officer. ‘Stigma around the disease is a large part of why more than half of nonwhite Americans in the survey believe that significant loss of memory or cognitive abilities is a normal part of aging. (It’s not.) Hispanic, Black and Native Americans are also twice as likely as whites to say they would not see a doctor if experiencing memory or thinking problems, even though the former groups are at higher risk for developing Alzheimer’s. Dementia specialists need better awareness of cultural realities that cause more impacted groups to be less likely to seek care,’ And, Hill adds, ‘researchers and those recruiting for clinical trials — which Black Americans express the least interest in of any group surveyed — must better accommodate socioeconomic barriers around transportation and work hours.’”

Add one more warning to the list of studies documenting the risks of “polypharmacy.” “Older adults who take three or more drugs for dementia or its complications,” reports UPI’s Brian P. Dunleavy, “could accelerate memory loss and declines in thinking ability as a result, according to a study by University of Michigan researchers. Despite this risk, one in seven adults with dementia in the United Stated who is older than 65 and lives outside of a nursing home takes three or more drugs to treat dementia or related disorders, such as depression. Polypharmacy, or taking multiple prescription drugs, also can raise the risk for injury and death in the elderly, as some of these medications can cause fatigue, weakness and delirium. ‘Dementia comes with lots of behavioral issues, from changes in sleep and depression to apathy and withdrawal, and providers, patients and caregivers may naturally seek to address these through medications,’ said study co-author Dr. Donovan Maust, an associate professor of psychiatry at University of Michigan Medicine in Ann Arbor. However, ‘the evidence supporting the use of many of them in people with dementia is pretty thin.’ People with dementia may be prescribed drugs that act on their central nervous system for behavioral reasons, despite the fact that the medications may speed their cognitive decline. Experts generally advise against polypharmacy in the elderly, as drugs taken simultaneously can interact and raise the risk for falls, overdoses and memory issues. ‘It appears that we have a lot of people on a lot of medications without a very good reason,’ Maust said. ‘It’s important for family members and providers to communicate often about what symptoms are happening, and what might be done with non-medication interventions such as physical therapy or sleep hygiene, as well as medications, to address them.’”

Adult Family Care: A Viable Alternative to Nursing Homes is AARP’s latest publication in its LTSS Choices series. “Adult family care (AFC) is a term loosely describing a combination of housing and LTSS in which care recipients live full time in a house or other small residential setting. This type of care is a viable alternative to nursing homes for older adults and people with disabilities. In collaboration with health care professionals, AFC offers individuals assistance with activities of daily living (ADLs) and personal care, and help with medications and other health care tasks. AFCs provide housing, services, a caregiver workforce, and often integration with the community. AFCs serve people who pay with private resources, as well as participants of Medicaid and other home- and community-based services (HCBS) programs in some states. More than 40 years ago, Oregon and Washington state established the first AFCs for private-pay residents and those receiving public funds. The goal, to create choices for people who prefer more homelike support in small residential settings, proved successful, and by 2009, 30 states had licensed a total of 18,901 AFC facilities with a capacity to serve 64,189 residents. Today, 18 states license AFC under assisted living regulations and 38 states include AFC among the array of LTSS residential care options available.”

A second March AARP report, produced in collaboration with the Administration for Community Living and State Assistive Technology Act programs, addresses the expanding universe of devices, equipment or systems commonly used to increase, maintain, or improve functional capabilities of older adults and individuals of all ages with disabilities. “Assistive Technology (AT) includes a wide range of technologies, from smart home and vehicle automation to devices that enable communication with health care providers. AT programs which run in partnership with state, local, and community organizations enable people with disabilities and older adults, caregivers and others working with them, to learn about, access and acquire AT. These programs, however, which can be real game changers and even life savers for so many families and individuals, are underutilized. Generally, people are unaware of how and where to find information about available AT, how to use the technology, where to find training and support, where to purchase the technology, and what funding resources are available to pay for the technology. Building partnerships among organizations serving people with disabilities and/or older adults is one way to expand awareness and access to AT. This report examines partnerships happening around the country at the state level to increase awareness and adoption of this important form of technology. It offers thumbnail case studies of state programs that are finding innovative ways to expand the availability of AT.”

Some good news about geriatric emergency departments: They save money. So conclude researchers in a new study, reports journalist Liz Seegert, that “found a significant reduction in the total cost of care when these older adults were treated in a geriatric emergency care department instead of a more traditional ED. Specialized geriatric emergency care can lower Medicare expenditures by up to $3,200 per beneficiary. Yet, there are only about 200 specialized geriatric emergency departments in the U.S., according to the American College of Emergency Physicians (ACEP), which accredits geriatric EDs. So, if patients fare better and it costs less, why aren’t more hospitals establishing geriatric EDs? ‘It comes down to reimbursement,’ according to study co-author Scott Dresden, MD, medical director of Geriatric Emergency Department Innovations (GEDI) at Northwestern Medicine and associate professor of emergency medicine at Northwestern University Feinberg School of Medicine. ‘It’s a new idea, and there hasn’t been a mechanism to bill for that.’ Northwestern has seen cost savings and better outcomes by reducing unnecessary ED visits and admissions up to three months after someone is discharged home with support from a geriatric ED. ‘That a couple of hours in the emergency department has long-lasting effects, at least 90 days out, is pretty remarkable to us.’ Geriatric emergency department (GED) programs incorporate specialized staff who focus on transitional care for older adults to reduce unnecessary hospitalizations and improve outcomes for this vulnerable patient population. Falls are a good example of a risk that can be reduced. ‘We’re actually providing the patients with the right level of care as opposed to the highest level of care, where a person who does have risks of falls and needs additional physical therapy and that sort of thing,’ Dresden said. ‘Because we’re looking and finding additional problems, whereas previously we would fix the fracture discharge them home.’”

While most of the recent attention on SNF staffing levels has focused on COVID-19 related deficiencies, a pre-pandemic SNF concern related to therapy staffing resurfaces in a new study published in Health Affairs. “In an effort to encourage greater value in SNF spending, the Centers for Medicare and Medicaid Services (CMS) changed how it paid for SNF services effective October 1, 2019. Under the new Patient Driven Payment Model (PDPM), the per diem payments that SNFs receive are based on patients’ clinical and functional characteristics at the time of SNF admission. These characteristics are used to classify patients into different payment categories reflecting predicted therapy and nursing costs. Different from the prior volume-driven Resource Utilization Groups system, reimbursement rates are no longer driven by the number of physical, occupational, and speech therapy minutes provided. Although the PDPM was designed to be budget-neutral, it completely altered SNF financial incentives around patient mix, staffing mix, and care delivery.” The bottom line: “We found” the study concludes, “that SNFs, on average, reduced therapist and therapy assistant staffing levels in the first three months of the program. After small but significant anticipatory reductions in September, staffing levels in the fourth quarter of 2019 declined by roughly 6 percent for physical therapists and occupational therapists and 10 percent for physical therapist assistants and occupational therapy assistants relative to changes in staffing levels observed for that same quarter in 2017 and 2018. Speech-language pathologist and physical therapist aide staffing levels were reduced by about 4 percent and 3 percent, respectively. Minimal or no changes in nursing staff and occupational therapist aide levels were observed after PDPM implementation. Consistent with the greater administrative flexibility afforded by contract staff, the overall therapy staff reductions observed in the first months of the PDPM were (thus) almost entirely driven by reductions in contract staff, rather than SNF employees. After years of growth in the amount of therapy provided by SNFs, (in the end, however), it remains unclear whether these staffing reductions represent an appropriate correction or a cost-saving response that could prevent patients from receiving needed rehabilitation services after hospitalization. Further work is needed to understand the extent to which therapy volume and delivery have changed in response to the PDPM and implications for patient outcomes. Future analyses will be complicated by the confounding effects of the COVID-19 pandemic.”

On a recent Thursday afternoon, writes Kaiser Health News’ Heidi de Marco, “Rhianna Alvarado struggled to don her protective gloves, which were too big for her petite hands. With her mom coaching her every move, she edged close to her father and gently removed the plastic tube from his throat that allows him to breathe. She then cautiously inserted a new one. ‘What’s next?’ asked her mom, Rocio Alvarado, 43. ‘I know, I know,’ replied Rhianna, her eyes constantly searching for her mom’s approval. Rhianna is only 13. When she finished the delicate task of changing her father’s tracheostomy tube, usually performed only by adults, she went back into her room to doodle on her sketch pad and play with her cat. Rhianna is among more than 3 million children and teens who help an ill or disabled family member, according to Caregiving in the U.S. 2020, a national survey published by the National Alliance for Caregiving and AARP. The survey also found that Hispanic and African American children are twice as likely to be youth caregivers as non-Hispanic white children. The pandemic has made caregiving harder for them, since many can no longer escape to school during the day. Despite the growing number of youth caregivers, they have little support. ‘If you look at all state and national caregiving programs and respite funding, they all begin at the age of 18,’ said Melinda Kavanaugh, an associate professor of social work at the University of Wisconsin-Milwaukee.”

“Alex Hernandez was 26 years old in 2014 when her mother was diagnosed with Stage IV colon cancer,” writes Forbes’ Deb Gordon. “On a visit home to Mexico, Hernandez realized her mother’s condition was bleak. She made a split decision to pause her life in Dallas and spent the better part of the next year caring for her mother. Hernandez’s story has become increasingly common as COVID-19 thrusts more young adults into unpaid caregiving roles. In the new Global Carer Well-Being Index from Embracing Carers, 25% of Gen Z and Millennial caregivers were in caregiving roles for the first time during the pandemic, compared with 15% of Gen X and Boomer caregivers. Overall, 20% of caregivers surveyed were new to caregiving and 60% of them were Gen Z or Millennials. Caregiving has gotten more difficult for everyone in the pandemic, but it’s been especially hard on young people. In the survey, 72% of Gen Z caregivers in the U.S. said their emotional or mental health had worsened. Worldwide, 77% of caregivers ages 18 to 34 said the pandemic has made them feel more burned out than ever before, compared to 57% of caregivers 65 and older. On top of pandemic interruptions to school, work, and social lives, caregiving can be especially disruptive to young people financially, just as they’re becoming independent or launching their careers. Nevertheless, despite the burdens of caregiving, Millennials were the most likely group to say caregiving was rewarding — 91% of Millennials in the U.S. and 88% worldwide. Hernandez said her mother’s cancer put her own life into perspective and helped her find her purpose. ‘It made me appreciate life so much more … knowing that it can end at any time … it made me value my own happiness more. It sounds weird, but my mother’s death made me want to live.’”

For Tony Tran, writes journalist Liz Seegert, “the biggest problem was the isolation and cultural pressure to keep it in the family. Barry Applebaum struggled with the stress and trying to remain stoic for his kids. Larry Bocchiere lost a sense of normalcy when he had to retire from his job. What these men, and millions of others like them, have in common is family caregiving — providing ongoing help for an aging parent, a spouse who is ill, or both. Although women still make up the majority of family caregivers, more and more men are stepping into the role: Some 40 percent of family caregivers are now men, according to the most recent research from AARP and the National Alliance for Caregiving, up from 33 percent a decade ago. Little is known about the impact of COVID-19 on this trend, but it’s safe to assume that more men were called on to pitch in with caregiving during this crisis as well. Like their female counterparts, these 16 million male family caregivers face tremendous challenges as they simultaneously try to balance work and raising a family with the physical and emotional demands of helping an ailing or aging loved one. But they’re also dealing with issues unique to their gender — from sometimes being less familiar and comfortable with the more personal and intimate aspects of caregiving to fighting stereotypes about the nature of their role. ‘Men are also less likely to ask for help and may be more reluctant to accept it if offered,’ says Carol Levine, former director of the families and healthcare project at the United Hospital Fund in New York. ‘They’ve been brought up to think they can do it all themselves, that asking for help is a sign of weakness.’”

At the heart of the caregiving experience is the ability to communicate: with those being cared for, one’s own support network, doctors and nurses, and so many others. How much more difficult then must the task be when deafness enters into the equation. “As the aging population grows,” writes Next Avenue’s Juana Poareo, “the number of deaf adults caring for their parents is only expected to increase. About 1 in 7 adults in the U.S. aged 65 and older are deaf. An estimated two to three children out of 1,000 are born deaf. In the U.S. and Canada, about 500,000 deaf people use ASL as their primary language. Solving the many persistent communication problems deaf caregivers face and providing appropriate respite opportunities aren't all that could be done to fix health care access for deaf and hard of hearing people. More sensitivity training is also crucial. ‘A lot of doctors ask dumb questions of deaf people,’ says Missy Keast, 54, a profoundly deaf ASL instructor who lives in Scottsdale, Ariz., and is president of the Arizona Association of the Deaf. She has been asked if she can read or write, if she lives with her parents and how she knows if she has received an email. She thinks the misconceptions go hand in hand with doctors not learning enough about their deaf and hard of hearing patients. Keast says more culturally appropriate medical training should be required, and it should be taught or informed by deaf people. Researchers also need to include the deaf community in more health studies that focus on their unique needs. ‘Fixing communication barriers in health care settings is crucial because misunderstandings can harm patient outcomes, increase health care costs and needlessly traumatize people.’”

On a recent afternoon, writes The Wall Street Journal’s Bonnie Miller Rubin, “Frank James, a resident at Commonwealth Senior Living in Charlottesville, Va., snared a front-row seat to the Broadway production of Aladdin — without ever leaving the facility. The 91-year-old traveled to the performance via virtual reality. Using a set of goggles from Dallas-based MyndVR, he got a 360-degree view of the stage and theater, letting him move his head to see the show — and the space around him — from any angle, as if he were actually there. ‘Claire just loved that music,’ he says, referring to his late wife of 65 years. ‘Seeing these shows again is invigorating. ... It just takes your mind off things like the lockdown.’ Once limited to gaming, VR is being embraced by an increasing number of long-term-care communities, which are turning to the devices to improve wellness and quality of life for this growing population. The caregivers say that letting residents roam through virtual environments such as distant cities or the outdoors helps them combat an array of age-related conditions — such as loneliness, depression and perhaps even cognitive deficits. Companies are springing up to package and sell VR experiences to senior-care facilities. MyndVR, which made the Broadway VR that Mr. James recently enjoyed, is one of the largest producers and aggregators of content. The company launched in 2018, according to CEO Chris Brickler, and is now in more than 150 eldercare facilities in 47 states and Canada, with hundreds of titles in its library. Other VR companies such as Rendever Inc., Viva Vita and Embodied Labs also make products for use in eldercare homes. VR also can connect older adults to families living far away. Though it isn’t designed specifically for older adults in senior housing, AARP Innovation Labs introduced Alcove, an app for Oculus devices, in 2019 as a way for family members to share an array of virtual experiences together, whether that is swimming with dolphins or playing a game of chess. At Embodied Labs, VR technology also plays a key role in promoting senior wellness, but is aimed at caregivers rather than residents. The platform uses VR as a training tool, so employees can walk in the shoes of someone with diminished memory, vision or mobility. Embodied Labs CEO Carrie Shaw started the company in 2016, after the death of her mother from Alzheimer’s. Today, Embodied Labs is in more than 200 senior organizations and 50 academic institutions to train the future healthcare workforce. ‘I always wanted to experience life from my mom’s perspective,’ Ms. Shaw says. ‘Now, we can do it in a safe and immersive way.’”

The immediate reaction to CMS’ loosening of nursing home visitation rules was overwhelming relief and anticipation, but, as Sarah Mervosh reports in The New York Times, “the swinging open of the doors has also exposed new consequences of a pandemic that has killed more than 179,000 residents and employees of long-term care facilities and left many others withering in isolation. ‘A year lost is a big loss,’ said Pauline Boss, a family therapist and professor emeritus at the University of Minnesota. Nursing homes now offer an early glimpse at what everyone may face in trying to go back to normal after a year of separation and stillness. Some reunions may be tinged with grief, others with reminders of all that has changed. As a geriatrician in San Francisco, Dr. Teresa Palmer, 68, was well positioned to advocate for her 103-year-old mother, Berenice De Luca Palmer, after federal officials recommended last March that nursing homes shut down to visitors. Dr. Palmer did local news interviews, checked on her mother often over Zoom and even accompanied her to occasional doctor’s appointments. But when Dr. Palmer finally walked into her mother’s room this month, she was shocked to find that her mother, who had shrunk to 98 pounds, was spending all of her time in bed. Dr. Palmer tried to raise her mother’s spirits, helping her write a letter to a cousin one day, bringing pizza for lunch the next. But by the third day, it became apparent that the problem was far more serious. Experts worry that some of the physical and cognitive changes experienced during the pandemic could become permanent because it is often difficult for older people to regain strength after losing weight or becoming bed-bound. The lost year has been particularly consequential for people with dementia, some of whom no longer recognize family members. ‘That is time that you are not going to get back with that person,’ said Lori Smetanka, executive director at the National Consumer Voice for Quality Long-Term Care, an advocacy group for residents and families. ‘We don’t know how to reverse that.’”

So much is written about Alzheimer’s disease, but no article is likely to be more compelling and poignant than John Colapinto’s portrait of American icon Tony Bennett. Colapinto combines a masterful summary of Bennett’s extraordinary life with an incredibly sad yet surprisingly uplifting view of the last chapter of a life lived in full. At 94, beset by the inexorable onslaught of Alzheimer’s disease, Tony Bennett survives. “Gayatri Devi, M.D., a neurologist at Lenox Hill Hospital in Manhattan, diagnosed Tony in 2016,” Colapinto writes. ‘Quality of life, progress of the disease and how long a sufferer lives depend first,’ she said, ‘on what kind of brain they bring to the situation. And Tony Bennett brought an amazingly versatile brain. He has some cognitive issues, but multiple other areas of his brain are still resilient and functioning well. He is doing so many things, at 94, that many people without dementia cannot do.’ One thing that did not change was Tony’s love of music and singing. Music’s peculiar power to reach even severely afflicted dementia patients, stirring memories and reestablishing connections to those around them, is well documented but not well understood. Neuroscientist and musician Daniel Levitin, author of the best sellers This Is Your Brain on Music and Successful Aging, points out that it is music’s primarily emotional appeal that enables it to tap memories not otherwise accessible to a mind afflicted by Alzheimer’s disease. Even severely affected patients are often able to recall the lyrics and melodies to songs they loved in adolescence, a time of high emotionality and self-discovery when the developing brain ‘tags’ memories as particularly salient and important. This would go far to explain the astonishing fact that after his diagnosis with Alzheimer’s, Tony Bennett continued to tour extensively, singing his 90-minute set of sophisticated music with such panache, precision and professionalism that audiences and critics never suspected his condition. And so one afternoon, Colapinto writes, he found himself sitting in Tony Bennett’s apartment as the singer’s longtime pianist Lee Musiker arrived. The first chord Musiker hit was from a song that wasn’t on the set list and that Tony hadn't sung much in recent years. Yet immediately, incredibly, he opened his mouth and out rolled a stream of rich, resonant notes, swelling up and outward from the lower part of his range, the melancholy tone perfectly matched to the lyric, which he produced with his famously clear articulation: The song was Maybe This Time by John Kander and Fred Ebb. The song built in intensity as the lyrics and aching melody mounted into his high register, a full three octaves from where he started, increasing in volume and power until he was filling the room with a crescendoing cry: “It’s got to happen, happen sometime — maybe this time, I'll winnnnnnn!"

Neuroscience even today cannot explain how a man whose speaking voice has become so hesitant — whose memory of events, people and places has largely vanished — can, at the sound of a musical cue, lift his voice in song with such beauty and expression, except to say that music and singing emerge from areas of the brain quite distinct from those associated with speech and language. The powerful feelings released by music can connect listeners to their deep emotional memories, even those inaccessible to the conscious mind. And so it went, for the next hour, a miraculous concert that was, quite literally, a gift for an observer and a stroll down memory lane.

“‘How about the Duke Ellington tune?’ Musiker said — and right away, Tony’s voice floated toward the ceiling like notes from a lovely muted trumpet. On Boulevard of Broken Dreams, the first single he cut for Columbia, in 1950, Tony, at 23 years old, had ended the song with a full bel canto window-rattler — and astonishingly he reproduced it now: On Fly Me to the Moon, he lofted his voice gently into the air just as he had done in his gorgeous 1965 recording, and on the up-tempo The Lady’s in Love With You, he nimbly moved through the intricate lyrics as if scatting. ‘Every time,’ Tony said — his first spontaneous verbal reaction of the afternoon. As the rehearsal went on, he increasingly traded short conversational back-and-forths with Musiker. At the end of a rousing When You're Smiling, Musiker jokily alluded to their audience of three people as 3 million people. ‘Actually,’ he added, ‘you once said that if even one person — remember you said this years ago?’ ‘Oh, yeah,’ Tony said. ‘If there’s one person in the club, it’s really intimate that way.’”

We are appalled and deeply saddened by the news of the tragedy in Atlanta last week, and the increasing violence against Asian Americans and Pacific Islanders over the past year. It’s particularly reprehensible that many of these senseless acts of violence target vulnerable elders in the Asian American and Pacific Islander communities. Our thoughts go to all of the individuals and families affected by these inexcusable acts.

As an organization deeply rooted in the San Francisco Bay Area, FCA serves family caregivers who reflect the diversity of our regional population, including caregivers of Asian and Pacific Island descent. To extend the impact of our efforts, FCA also partners with organizations that support API family caregivers, including Kimochi and Self-Help for the Elderly. In addition, our staff and our board include members of these communities. For these reasons and so many more, we must voice our outrage and advocate for action.

It’s official – we launched our new logo and new website.

While the FCA team was fond of the nautilus design that served us for many years, we knew it was time to move to a modern look. We believe the new logo reflects our renewed commitment to:

As we look ahead to the coming year, we’re more focused than ever on our mission:

The Rosalinde and Arthur Gilbert Foundation, Bader Philanthropies, Inc., and FCA are pleased to announce the winning organizations of the 13th Innovations in Alzheimer’s Caregiving Awards. Each organization delivers a state-of-the-art program that addresses the needs of caregivers and those they care for with Alzheimer’s disease or a related condition. Winners receive $20,000 for their work. Please click here to view detailed information on the 2020 programs.

CaringKind, The Heart of Alzheimer’s Caregiving – New York, NY

Volunteers of America – Minnesota – Edina, MN

University of Southern California Family Caregiver Support Center – Los Angeles, CA

In light of COVID-19, FCA will present A Conversation With 2020 Innovations in Alzheimer’s Caregiving Award Winners online on Thursday, April 29, 11 a.m. (PT). Register here.

Check out the 26 caregiver programs from the California Caregiver Resource Centers offered in April. Six in Spanish and one in Vietnamese. These are offered at no cost to participants. April topics include:

View and download the event calendar here: bit.ly/CRCAPR

Hosted by FCA and Reimagine, join sessions 2 and 3 of conversations with filmmaker Kirsten Johnson and guests to explore the role of food in grief, mourning, healing, and legacy.

April 13: Sandor Ellix Katz, fermentation revivalist

April 20: Kate Washington, essayist, food writer, and author of Already Toast: Caregiving and Burnout in America

When: Tuesday, April 13, and Tuesday, April 20, 5 p.m. to 6 p.m. (PDT)

Cost: $0 to $50

To learn more, please click 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.

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

Help support FCA/NCC’s continuing advocacy efforts today with a donation through Network for Good.

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Subscribe to Caregiving Policy Digest and Connections (for family caregivers) here.

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