A 102-page report marks the RAISE Act Family Caregiving Advisory Council’s September completion of the first-of-its-kind National Strategy to Support Family Caregivers. The product of extensive deliberation and analysis of expert contributions, the report includes substantial background information on the current landscape of family caregiving, as well as many proposed federal, state and local actions in support of caregivers. The proposals are organized under five major goals: 

The ACL website provides access to the entire document and supporting materials. Comments from the public are encouraged through the deadline of November 30. 

The Biden administration has announced an initiative to further implement its early 2022 call for improved nursing home oversight. “The Social Security Act,” writes CMS in a memo to State survey agency directors, “requires CMS to conduct a Special Focus Facility (SFF) program which focuses on nursing homes that have a persistent record of noncompliance leading to poor quality of care. CMS’ SFF program requires the persistently poorest performing facilities selected in each state to be inspected no less than once every six months and that increasingly severe (progressive) enforcement actions are taken when warranted. While the SFF program has helped facilities improve their compliance and quality, there are some facilities that have not seen the same results. Some facilities fail to demonstrate the improvements needed to graduate from the program and can therefore remain in the program for a prolonged period of time. Additionally, there are some that graduate from the program only to see their compliance and quality regress later (commonly known as ‘yo-yo’ noncompliance). Both of these scenarios place nursing home residents’ health and safety at risk. Therefore, CMS is revising the SFF program to protect and improve the quality of care that residents living in these facilities receive. These changes aim to address facilities remaining in the SFF program for too long and facilities with ‘yo-yo’ noncompliance after graduating. Additionally, because of the importance of nursing home staffing, CMS is informing State Survey Agencies to consider a facility’s staffing levels data when selecting SFFs from the candidate list.”

Several experts, reported the Washington Post’s Rachel Rubein, “praised the move as a step in the right direction, noting that CMS has historically been reluctant to pull federal funding from facilities that weren’t improving. Harvard Medical Schools’s David Grabowski said he couldn’t recall many instances where the agency shut down nursing homes in his over two decades studying the industry. On the other hand, the nation’s major nursing home lobby, the American Health Care Association (AHCA), expressed concern that the rhetoric around some of the changes ‘is degrading’ to the millions of staff who have ‘risked their lives serving on the front lines during this pandemic.’ Both AHCA and LeadingAge — which represents nonprofit aging service providers — reiterated their long-standing calls for more SNF funding. Some advocates — such as Richard Mollot, the head of the Long Term Care Community Coalition — want to see the small Special Focus Facility program expanded, saying a much higher number of facilities are in need of increased scrutiny. On Capitol Hill Sen. Robert P. Casey Jr., the chair of the Senate Special Committee on Aging, acknowledged that the reach of the program is limited by its funding. Along with Senate Finance Chair Ron Wyden he has introduced legislation that would expand the program to no fewer than 5 percent of the lowest rated facilities, appropriating $14.8 million annually for the effort. ‘The larger issue is, are we going to be serious about quality of care or not?’ And if you're not serious about funding, I don’t think you’re going to get to the reforms that we need.’” 

From Justice and Aging comes an Issue Brief addressing “Racial Disparities in Nursing Facilities and How to Address Them.” “Numerous studies have shown that Black nursing facility residents are more likely than other populations to receive poor nursing facility care. The majority of these studies have looked at data across facilities, noting an increased likelihood that Black residents reside in low-quality facilities. A smaller number of studies look at data within facilities, finding generally that Black residents receive poorer care than the facility’s other residents. A review of available research demonstrates racial disparities in admissions to nursing facilities, resident hospitalization rates, staffing levels, other quality measures, and COVID-19 infections and deaths.” The Justice and Aging brief offers a number of recommendations for alleviating the racial disparaging disparities in SNFs, including: 

The Center for Medicare Advocacy has taken its case to foster increased access to home care services to the DC federal district court. In filing its class-action, said CMA’s executive director Judith Stein, “We turned to the courts for enforcement because Medicare beneficiaries with long-term and chronic conditions have been unable to access necessary home health aide services for far too long. These beneficiaries qualify for aide services under the law, but they face a pattern of misinformation, denials, and underservice by Medicare-certified home health agencies and Medicare contractors. They can’t wait any longer. Medicare must live up to its promise and ensure that older and disabled adults receive the home health aide services they require and qualify for under law.” Added Alice Bers, Litigation Director of the Center for Medicare Advocacy: “Home health aides are often the very services that allow people with long-term disabilities to remain in their homes. Without this critical care, they are one crisis away from being forced into an institutional setting.” (See CMA’s complaint here)

The Administration for Community Living has announced the launch of a National Center to strengthen the direct care workforce. “This initiative – The Direct Care Workforce Capacity Building Center -- will facilitate collaboration with stakeholders to improve recruitment, retention, training and professional development of the direct care workers who make it possible for people with disabilities and older adults to live in their own homes and communities. ‘The shortage of direct care workers has become a national crisis and a serious civil rights issue,’ said ACL Acting Administrator Alison Barkoff. ‘Increasing numbers of people with disabilities and older adults who want to live in the community – a right protected by the Americans with Disabilities Act and other civil rights laws – are unable to get the services they need to do so.’ Long-standing workforce shortages have reached crisis levels during the COVID-19 pandemic; today, more than three-quarters of service providers are not accepting new clients and more than half have cut services as a result of the direct care workforce shortage. High turnover – averaging nearly 44 percent across states – also mean that people who are able to get services often experience service disruptions and receive inconsistent care. As a result, increasing numbers of people are left with no option but to move to nursing homes and other institutions, people who want to leave these facilities cannot, and the health and safety of those who live in the community is at risk. In addition to undermining people’s civil right to community living, this leads to poorer health outcomes and higher costs of care, which are most often borne by taxpayers.”

Continuing its research efforts related to Long Term Services and Supports programs, AARP’s Public Policy Institute has published a report detailing how five such programs scale up and serve increasing numbers of individuals. The five programs featured are PACE (Program of All- Inclusive Care the for Elderly), Green House nursing homes, self-direction of home and community based services, supportive services in housing for older adults (SHASAM- Self Help Active Services for Aging and SASH - Support and Services at Home), and two approaches – ABLE and CAPABLE -- that rely on occupational therapy, physical therapy, and home repair professionals to improve LTSS for older adults and help them remain at home. “Although federal policy sets the tone for many of these innovations,” the report argues, “state agencies can act under the existing policy environment to bring these innovations to their residents. If a state does not have a self-directed HCBS program, it should create one. States could also amend their HCBS waivers and state plan amendments to incorporate CAPABLE as a covered service. Similarly, states could work with provider organizations to develop a PACE application for areas that lack PACE coverage. Policy makers should also consider ways to remove existing barriers that inhibit scalability. For instance, state governments could modify certificate of need (CON) laws to offer exceptions for new Green House developments and other innovative models of nursing home delivery. The 2022 National Academies of Science, Engineering, and Medicine report on nursing home quality includes CON elimination in its recommendations section. Removing CON barriers for Green Houses could foster innovation in nursing home care while still preventing an influx of new large-scale facilities. Providers would have to demonstrate that their project would meet certain small-home standards and still get approval from the appropriate state licensing board.”

With the future of Medicare and Medicaid having emerged as a major issue in the closing days of the 2022 election campaign, a recent opinion poll from the AP-NORC Center for Public Affairs Research found widespread support for the two healthcare programs, as well as for expanded assistance to help to help Americans prepare for the costs of providing and receiving long-term care. “There is bipartisan support for a host of policies to help pay for the costs of long-term care and caregiving, many of which would involve an expanded role for the federal government. Seventy-five percent of U.S. adults overall favor long-term care coverage through Medicare Advantage or supplemental insurance, and about two-thirds support a government-administered long-term care insurance program, government funding for low-income people to receive long-term care in their homes, or Social Security earnings credit for providing care to a loved one. Tax breaks for purchasing long-term care insurance and for providing care to a family member also enjoy support from about two-thirds of the public. Some of these policies have more support among those age 50 and older, but majorities of those age 18-49 are also in favor of them. These differences by age are seen among adults overall and within racial and ethnic groups. Expanding Medicare coverage of certain services is also popular across age groups, racial and ethnic groups, and party identification. More than 8 in 10 adults think Medicare coverage should be expanded to cover dental care (87%), eye examinations for prescription glasses (87%), hearing aids (86%), and long-term care (81%).”

As the saying goes, “if at first you don’t succeed try, try again.” For pharmaceutical companies Biogen and Eisai, makers of the very controversial Alzheimer’s drug Aduhelm, that advice must have resonated as they reported positive late-stage clinical trial results for lecanemab. The drug, reported the New York Times’ Rebecca Robbins and Pam Belluck, significantly slowed cognitive decline. “The strong results boost the drug’s chances of winning approval and offer renewed hope for a class of Alzheimer’s drugs that have repeatedly failed or generated mixed results. Cognitive decline in the group of volunteers who received lecanemab was reduced by 27 percent compared with the group who received a placebo in the clinical trial, which enrolled nearly 1,800 participants with mild cognitive impairment or mild Alzheimer’s disease, the companies said. The trial of lecanemab, which is administered via intravenous infusion, was the largest to date to test whether clearing the brain of plaques formed by the accumulation of a protein called amyloid could slow the progression of Alzheimer’s disease. As with previous anti-amyloid drugs, some patients taking lecanemab experienced brain swelling or brain bleeding, but the prevalence of these side effects was lower than with Aduhelm and other experimental medications. Dr. Lon Schneider, director of the California Alzheimer’s Disease Center at the University of Southern California, said the effect ‘is small and would not be considered by many as a minimally clinically important difference.’ However, he added, ‘others would strongly disagree and say it’s clinically meaningful.’” An FDA decision on whether to grant “accelerated approval” to lecanamab is expected early in the new year.

Alzheimer’s is not the only intractable condition making news recently. Gaining FDA approval in late September was Relyvrio, a drug for amyotrophic lateral sclerosis (ALS). The approval, writes the Washington Post’s Laurie McGinley, had to overcome strong doubts from agency scientists, but heartened patients and advocates who pushed for the medication. “The newly approved therapy is designed to slow the disease by protecting nerve cells in the brain and spinal cord destroyed by ALS. The ailment paralyzes patients, robbing them of their ability to walk, talk and eventually breathe. Patients typically die within three to five years, though some live much longer with the condition sometimes called “Lou Gehrig’s disease” for the renowned baseball player diagnosed in 1939. FDA said the efficacy of Relyvrio, the first new therapy approved for ALS in five years, was demonstrated in a 24-week study in which 137 patients were randomized to receive Relyvrio or placebo. The patients treated with the drug experienced a 25 percent slower rate of decline in performing essential activities such as walking, talking and cutting food compared with those receiving a placebo. In addition, the FDA said, a long-term analysis showed that patients who originally received Relyvrio vs. those who took the placebo lived longer. Amylyx, the Cambridge, Mass., biotech company that makes the drug, said that survival benefit was a median of about 10 months. The new drug’s price is not insignificant: $158,000 per year. Amlyx officials said the company would provide financial assistance to eliminate co-payments for people with commercial insurance and would make the drug available without charge to uninsured patients who meet eligibility criteria. They said they are exploring ways to keep down out-of-pocket costs for patients with government coverage.”

Financial obligations incurred by nursing home residents’ families (as discussed in the September Policy Digest) have stirred the federal government’s attention. The Consumer Financial Protection Board and CMS have released several significant documents regarding illegal SNF debt collection practices. The two agencies confirm that “a nursing care facility may not require that a third-party caregiver personally guarantee payment of a nursing home resident’s bills as a condition of the resident’s admission to the facility. Such conditions violate the Nursing Home Reform Act and subsequent attempts to collect debts from caregivers may violate the Fair Debt Collection Practices Act and the Fair Credit Reporting Act. Caregivers have been subjected to wage garnishment and have even lost their homes after being pursued by nursing homes for debts associated with family members’ or friends’ costs of care.” Consumers, CFPB states, can submit complaints about their debt collection issues by visiting the CFPB’s website or by calling (855) 411-CFPB (2372).

Meanwhile the broader medical debt crisis grows ever more dire in the wake of inflationary pressures and healthcare institutions’ pursuit of ever more revenue. As the New York Times’ Jessica Silver-Greenberg and Katie Thomas write, “In 2018, senior executives at one of the country’s largest nonprofit hospital chains, Providence, were frustrated. They were spending hundreds of millions of dollars providing free health care to patients. It was eating into their bottom line. The executives, led by Providence’s chief financial officer at the time, devised a solution: a program called Rev-Up. Rev-Up provided Providence’s employees with a detailed playbook for wringing money out of patients — even those who were supposed to receive free care because of their low incomes. In training materials obtained by The Times, members of the hospital staff were instructed how to approach patients and pressure them to pay. ‘Ask every patient, every time,’ the materials said. Instead of using ‘weak’ phrases — like ‘Would you mind paying?’— employees were told to ask how patients wanted to pay. Soliciting money ‘is part of your role. It’s not an option.’ If patients did not pay, Providence sent debt collectors to pursue them.” 

Leading the response to experiences like Ms. Nyfors, several state attorneys-general -- in Washington State, California and Minnesota -- have taken action. As Community Catalyst’s Sheila Phillips reports, “Nonprofit hospitals make up about 3,000, or close to 50%, of hospitals in the U.S. and are required by federal law to provide charity care to maintain their tax-exempt status. The Joint Committee on Taxation estimates that the total amount of tax relief for nonprofit hospitals equated to $24.6 billion, yet only a small percentage of the net income of these hospitals goes to their financial assistance. The federal requirements include having written policies that must be publicized widely throughout the hospitals and including it in discharge paperwork and follow-up bills to the patients. The criteria of who qualifies for financial aid polices varies state to state. It is well documented that patients are not well-informed of financial assistance. A 2015 study showed that only 44% of hospitals informed patients of financial assistance prior to collecting unpaid medical bills.” 

With Medicare’s annual open enrollment season in full swing, Medicare Advantage plans continue to garner attention, including some of their insurance sponsors’ marketing efforts. In a harsh report by the Senate Finance Committee’s majority staff – “Decptive Marketing Practices Flourish in Medicare Advantage” -- the authors, reported the New York Times’ Reed Abelson and Margo Sanger-Katz, charge companies selling private MA plans to older adults with posing as the Internal Revenue Service and other government agencies, misleading customers about the size of their networks and preying on vulnerable people with dementia and cognitive impairment. “Most of the behavior documented in the report came from insurance brokers or third-party marketing firms hired by the companies, not the insurers themselves. The Senate report did not say which insurers benefited from the behaviors described. But it identified similar misleading behavior across multiple states, and an escalating number of complaints, suggesting that the tactics were not limited to a small group of bad actors. ‘It is unacceptable for this magnitude of fraudsters and scam artists to be running amok in Medicare,’ said committee chairman Ron Wyden. ‘Medicare Advantage offers valuable plan options and extra benefits to many seniors but it is critical to stop any tactics or actors that harm seniors or undermine their confidence in the program.’”

The Biden administration has extended the Covid-19 public health emergency (PHE) through January 11. First declared in January 2020, the declaration, reports the Associated Press’ Amanda Seitz, “enabled the emergency authorization of COVID vaccines, testing and treatments for free. It expanded Medicaid coverage to millions of people, many of whom who will risk losing that coverage once the emergency ends. It temporarily opened up telehealth access for Medicare recipients, enabling doctors to collect the same rates for those visits and encouraging health networks to adopt telehealth technology.”. At the start of the pandemic, write Kaiser Family Foundation’s Jennifer Tolbert and Meghana Ammula, “Congress enacted the Families First Coronavirus Response Act (FFCRA), which included a requirement that Medicaid programs keep people continuously enrolled through the end of the month in which the COVID-19 public health emergency (PHE) ends, in exchange for enhanced federal funding. Primarily due to the continuous enrollment requirement, Medicaid enrollment has grown substantially compared to before the pandemic and the uninsured rate has dropped. While the number of Medicaid enrollees who may be disenrolled during the unwinding period is highly uncertain, it is estimated that millions will lose coverage. Based on illustrative scenarios—a 5% decline in total enrollment and a 13% decline in enrollment—KFF estimates that between 5.3 million and 14.2 million people will lose Medicaid coverage during the 12-month unwinding period.”

While the latest extension postpones a feared post-PHE loss of Medicaid coverage for millions of people, advocacy groups are ramping up recommendations to states in order to avoid that outcome. When the PHE’s continuous coverage requirement ends, states will resume their pre-pandemic processes for establishing whether a person continues to qualify for Medicaid — processes known as redeterminations. If not done with considerable planning and care, say advocacy groups, this resumption could result in unnecessary coverage losses. Federal law requires states to maximize electronic eligibility redeterminations rather than requiring a mailed application. As the end of the PHE and restart of redeterminations loom on the horizon, states, urges FamiliesUSA, should do everything in their power to renew coverage for people who remain eligible, especially when readily available data can often confirm eligibility. Critical to achieving that goal will be the ex parte (also known as automated or passive) renewals process, a crucial tool states must use under federal law to adequately protect Medicaid coverage for their low-income residents during redeterminations. “This process enables Medicaid agencies to renew beneficiaries’ coverage based on existing and accessible beneficiary data without having to contact beneficiaries for updated information. States need to utilize every moment during the current PHE extension and any future extensions to go beyond federal guidance and improve their ex parte processes to ensure minimal coverage losses.” (For CMS guidance on post-PHE preparations see here.)

Good news for supporters of a national paid family and medical leave program; new survey data from a Global Strategy Group Navigator poll finds that: overwhelming majorities across party, race, and ethnicity support a federal paid family and medical leave program; majorities would be more likely to support a candidate who supported paid family and medical leave; and a range of reasons strongly support paid family and medical leave, including benefits across families, improved health outcomes, and lowered employee turnover. Meanwhile, California, a bellwether state in the establishment of paid family leave, has recently expanded its program’s available benefits to provide an increased wage replacement rate, beginning in 2025, to 90 percent for lower-wage workers (those who earn up to 70 percent of the state average quarterly wage), and to 70 percent for all other workers. This increased benefit would be fully funded by removing the taxable wage ceiling thereby allowing all California employees to contribute an equal percentage of their monthly income into the fund. With this funding mechanism, 91 percent of California workers would see no change in their annual contribution into the fund.

October 17 marked the beginning of a new era in consumer electronics: the availability of over-the-counter hearing aids. “Where for decades,” writes Kaiser Health News’ Phil Galewitz, “it cost thousands of dollars to get a device that could be purchased only with a prescription from an audiologist or other hearing professional, now a new category of over-the-counter aids are selling for hundreds of dollars. Walmart says it will sell a hearing aid for as little as $199. The over-the-counter aids are intended for adults with mild to moderate hearing loss — a market of tens of millions of people, many of whom have until now avoided getting help because devices were so expensive. ‘From a conceptual point of view, this is huge that this is finally happening,’ said Dr. Frank Lin, director of the Cochlear Center for Hearing and Public Health at Johns Hopkins University in Baltimore. He predicts it could take a couple of years for the new market to shake out as manufacturers and retailers get accustomed to selling aids and consumers become familiar with the options. Some new companies have entered the market, including Sony. It will sell its lowest-cost, self-fitting OTC hearing aid for $999 at Best Buy and other retailers. Walmart said it will offer an assortment of OTC hearing aids, including some at $199 to $299 per pair. Nicholas Reed, an audiologist and assistant professor at the Bloomberg School of Public Health at Johns Hopkins, said the devices are likely less dangerous than listening to music with earbuds turned up too high. The regulations require the new aids to have safe maximum audio levels to help protect consumers’ hearing. Reed recommends looking for OTC hearing aids with generous return policies, exceeding a month. Consumers may want to try a device for a few weeks to see how it works. If one brand doesn’t work, they should try another.” Advice for OTC hearing aids is available at the Hearing Loss Association of America website, as well as at Wirecutter, a product evaluation service of the New York Times.

Cooing, giggling and the patter of tiny feet mix with the sound of walkers and wheelchairs at a nursing home in southern Japan. In this graying nation, one home has been recruiting an unusual class of workers to enliven its residents’ days. These are “baby workers,” as the nursing home’s head calls them: 32 children so far, all under 4 years old, who spend time with its residents, who are mostly in their 80s. Residents strike up conversations with the young helpers. The babies, accompanied by their parents or guardians (usually mothers), offer the residents hugs. The visitors’ reward? Diapers, baby formula, free baby photo shoots and coupons for a nearby café. The facility, Ichoan Nursing Home, is in Kitakyushu, a city of 940,000 in Fukuoka Prefecture that is aging and shrinking like the rest of Japan. As families have become smaller and older people more isolated, the nursing home’s baby worker program has helped people connect across generations. The concept of letting nursing home residents interact with children is not new. In Seattle, residents of Providence Mount St. Vincent have shared their facility with a child care program for newborns to 5-year-olds since 1991. Expectations are loose for the little visitors, since they can be hard to corral. Toddlers are asked to stroll around the nursing home and interact with the residents, and parents help the babies circulate. ‘Nothing is mandatory,’ said nursing home director Ms. Kimie Gondo. ‘The babies decide when they come and for how long they want to stay.’” (Hikari Hida and John Yoon, the New York Times)

On August 18 FCA hosted a day of “caregiver conversations” to 1) raise awareness of and support for family caregivers of adults living with serious illness; 2) provide a forum to bring caregivers and providers together to listen and learn from each other; and 3) identify service gaps, opportunities and help connect currently available resources to San Francisco family caregivers. A recording of the proceedings is accessible on YouTube.

Editor: Alan K. Kaplan, (attorney and health policy consultant)

Contributor: Kathleen Kelly (executive director)

Production: Calvin Hu

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.

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