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Long-Term Care Efforts Supported By Foundations
According to a Kaiser Family Foundation (KFF) update on state-reported COVID-19 cases and deaths in long-term care (LTC) facilities, COVID-19 had caused the deaths of 131,178 LTC facility residents and staff as of January 5, 2021, across all fifty states and Washington, D.C. The KFF said that nationwide, deaths in such facilities accounted for 38 percent of all COVID-19 deaths. An October 2020 KFF analysis found that “nursing homes with relatively high shares of Black or Hispanic residents were more likely to report at least one COVID-19 death” than those with lower shares.
The Department of Health and Human Services recognizes that COVID-19 “continues to take a devastating toll on nursing homes stretched thin and disproportionately impacted due in part to factors such as their congregate setting and the existing vulnerabilities of older residents with comorbidities,” according to a December 7, 2020, press release. The Trump administration announced in this release that it was awarding a second round of performance payments—this time, more than $523 million—to more than 9,000 nursing homes. The homes were rewarded for having successfully reduced “COVID-19 related infections and deaths between September and October” 2020.
Meanwhile, COVID-19 is not the only challenge facing LTC stakeholders. In November 2020 the Centers for Medicare and Medicaid Services released a toolkit to help states “in their efforts to expand and enhance home and community-based services” and “to rebalance” long-term services and supports (LTSS) ”from institutional to community-based systems.”
“Financing Long-Term Services and Supports for the Elderly,” the title of a July 2020 issue brief produced by Altarum, has been an ongoing subject of debate for years. “Medicare does not cover” LTSS, but “most Americans think it does,” author Nils Franco writes. Private LTC insurance, which covers 11 percent of seniors (according to Urban Institute research), “is rarely even accessible, because the market for it has collapsed,” the author maintains. As a consequence, “large LTSS costs must come out-of-pocket” for older people until they potentially qualify for Medicaid.
Interestingly, a July 2020 report titled Learning from New State Initiatives in Financing Long-Term Services and Supports, published by LeadingAge LTSS Center @UMass Boston and Community Catalyst’s Center for Consumer Engagement in Health Innovation, provides further insights on the financing question. According to the report, the “current approach [for funding LTSS]—based on Medicaid, [personal] savings, and private insurance—is not meeting the needs of families, providers, [or] public payers.” The two main strategies for increasing LTSS insurance coverage are a federal approach that attempts to attach LTSS insurance to other federal health insurance programs and, most recently, “state-based social insurance programs,” which are attracting “growing interest.” Funded by the Robert Wood Johnson Foundation (RWJF), the report looks at the status of social insurance initiatives at various stages of development in six states—California, Hawaii, Maine, Michigan, Minnesota, and Washington—to help pay for LTSS. The report is based on qualitative interviews with stakeholders. “Many stakeholders discussed the importance of gathering stories from individuals and families about what a reform could mean for them personally,” which moves the policy from the abstract to the concrete, the report states. Other insights include the importance of an “effective coalition” to organize and activate “key stakeholders” and an “understanding that the politically feasible solution was preferred to the technically perfect one.”
The National Alliance for Caregiving and AARP published their Caregiving in the US 2020 report in May 2020, funded by The John A. Hartford Foundation (JAHF), the Gordon and Betty Moore Foundation, and several other entities. The prevalence rate (percentage) of adult Americans (ages eighteen or older) who provided unpaid (volunteer) care as a family member or friend to an adult or child with health care needs or disability increased from 18.2 percent in 2015 to a projected 21.3 percent in 2020. The direct care workforce was excluded from the research, which was fielded in 2019.
Following are examples of some foundations that focus on the needs of caregivers, as well as a sampling of foundation grants related to other aspects of LTC.
Grants
Tufts Health Plan Foundation, which funds nonprofits in four New England states, awarded a three-year, $210,000 grant to Community Catalyst “to engage and train a diverse group of older people to inform policy ideas for reforming” the LTSS system in Massachusetts, according to a December 2020 press release. This group of older people and family caregivers will add their voices to the discussion already under way among academics, policy makers, advocates, and industry leaders around the US and in the state. The impetus for this project was COVID-19, which laid bare the LTSS system’s shortcomings for older adults, both those residing in congregate-living communities and those receiving care at home. Massachusetts Senior Action Council and the LTSS Center partner on this project.
Assisted living “is increasingly serving a vulnerable population of low-income older adults” who are dually enrolled in both Medicaid and Medicare, according to Donaghue Medical Research Foundation materials. “However, little is known” about this population’s needs, the quality of care it receives, and how this care varies across states and assisted living providers, the materials state. In 2020 that foundation awarded a $199,520 grant to Brown University for a project, directed by Kali Thomas, to look at disparities in outcomes among dual enrollees living in assisted living communities. Thomas told Health Affairs, “The majority of states have either a waiver, state plan, or both that cover services in assisted living,” but not room and board, through Medicaid. States can help in other ways with those uncovered costs, however, she noted. Medicare also cannot pay for residential care in assisted living. Finding out more about disparities in outcomes could “inform policy and payment decisions,” the foundation said. The National Association for Regulatory Administration and National Center for Assisted Living are partnering with Brown researchers on this project.
During the COVID-19 pandemic the public has become more aware of nursing homes, “but often through a negative lens that impedes productive, solution-focused” discussion, according to a September 2020 JAHF press release. This foundation awarded a $499,883 grant to the FrameWorks Institute “to develop a powerful communications strategy to help stakeholders articulate a vision for nursing home care that is more effective, inclusive and equitable for residents and staff.” The grantee’s project includes research on “the public’s understanding of nursing home care,” which will yield communications recommendations and support for advocates, experts, residents, and staff.
Outcomes
The Johns Hopkins School of Nursing started its Community Aging in Place—Advancing Better Living for Elders (CAPABLE) program in Baltimore, Maryland, in 2009. CAPABLE is a client-centered and client-directed “home-based intervention to increase mobility, functionality, and capacity to ‘age in place’ for low-income older adults,” according to its website. An interprofessional team including an occupational therapist, a registered nurse, and a “handy worker” helps older adults live stronger and safer at home. The program costs about $3,000 per person over the course of five months (paid for by the funding entity) but saves around $20,000 in medical costs, according to a 2017 Health Affairs article by Sarah Ruiz and coauthors. Clients decide which functional goals they want to address to improve their performance of activities of daily living. CAPABLE has now grown to more than thirty sites—from Alaska to North Carolina in the US, and even a site in Australia. “CAPABLE has been tested in multiple small and large trials, each showing a benefit towards better function and lower hospitalization rates,” the website says. Sarah Szanton, who is cocreator and program director, explained to Health Affairs in December 2020 that as health care moves toward value-based care, “there is more incentive to implement programs like CAPABLE that prevent hospitalization and nursing home admission” and that COVID-19 has made this an “even more clear and pressing” aim.
CAPABLE can be funded through a health system, accountable care organization, Program of All-Inclusive Care for the Elderly (PACE), Medicaid waiver, or Medicare Advantage plan or through Meals on Wheels or private philanthropy, among other options. Foundations currently funding the program include the Rita and Alex Hillman Foundation. Its five-year, $2,849,753 grant goes toward “strategic scaling” of the program, including online interactive training for new sites and clinicians and salary support for Hopkins to help implement such sites. The Harry and Jeanette Weinberg Foundation provides funding for at least eight sites. Others funding sites in their local areas include Next50 Initiative, the RRF Foundation for Aging, and St. David’s Foundation. The JAHF and the RWJF are past funders.
In November 2020 the Jewish Healthcare Foundation (JHF) released a twenty-minute documentary titled What COVID-19 Exposed in Long-Term Care. The film “explores the causes behind the COVID-19 crisis” in facilities across the US, according to the funder’s website. Sometimes they have been “weakened by forces beyond their control: inadequate resources, a feeble response from our health systems and public health authorities, and years of underfunding.” But “alarm bells” for a catastrophe like a pandemic “have been ignored for years.” The JHF maintains that “the whole industry is in trouble” and that ageism may be affecting policy making.
The Ralph C. Wilson Jr. Foundation launched Tight Knit, a documentary and podcast series, in August 2020. This first season (two films and eight podcasts) “spotlights the many rewards and challenges of being a family caregiver,” according to a press release. Tight Knit features interviews with caregivers and their loved ones in southeast Michigan and western New York, the foundation’s funding areas. Wilson, who passed away in 2014, owned the National Football League’s Buffalo Bills.
Published Work
In 2020 the JHF awarded a grant to the LTSS Center “to make the case” that skilled nursing facilities (SNFs) in Pennsylvania are underfunded by Medicaid, according to the foundation, which is located in Pittsburgh. The grantee developed “a short, fact-based, and action-oriented case” for increased funding by documenting the effects of having high-quality and viable nonprofit SNFs” and explained “the economic impact and resulting risk to Pennsylvanians” if SNFs should close, the JHF said. The grantee released a January 2021 report on this subject. The JHF has since distributed the report to the state’s legislators.
In January 2021 PHI released Caring for the Future: The Power and Potential of America’s Direct Care Workforce. This 126-page report was funded by the W. K. Kellogg Foundation, the Woodcock Foundation, and the JAHF. The report states that these 4.6 million front-line workers “are predominantly women, people of color, and immigrants” and that workers in this profession “are not valued, compensated, or supported at the level they deserve.” PHI’s president commented in the report about the considerable changes that have taken place in recent years, including the growth of both LTSS and the direct care workforce “spurred largely” by more older adults and “the expansion of home and community-based services as states have rebalanced their Medicaid spending.” The report’s eight recommendations include “increase compensation” (but also be aware of the unintended consequences of doing so). “Unless public and private sector leaders invest significantly” in this direct care workforce by improving job quality, as PHI suggests, “long-term care employers will not be able to recruit and retain” enough such “workers to meet growing demand,” according to a press release. As “the nation’s leading authority on the direct care workforce,” PHI promotes high-quality direct care jobs as the basis for high-quality care for older adults and people with disabilities, according to its website.
In October 2020 the California Health Care Foundation published a seven-page fact sheet titled “Long-Term Services and Supports in Medi-Cal.” Part of the funder’s Medi-Cal Explained series about California’s Medicaid program, the fact sheet contains an overview of which LTSS benefits are covered. The authors, both from Chapman Consulting, mention that most federal “waiver programs are not available statewide” and that the largest share of Medi-Cal fee-for-service spending on LTC in fiscal year 2018 went for home health and personal care. Ongoing challenges in Medi-Cal LTSS include ensuring quality of care, mainly because “very few state or national quality indicators” apply directly to LTSS delivery. Among emerging policy opportunities is the possibility of maintaining several LTSS policies that were implemented by California and the federal government during the COVID-19 pandemic. These policies have allowed “for flexibilities so that people are not sent to nursing facilities,” and the policies may become future best practices.
Advancing Action, 2020: A State Scorecard on Long-Term Services and Supports for Older Adults, People with Physical Disabilities, and Family Caregivers, published in September 2020, was funded by AARP, the AARP Foundation, the Commonwealth Fund, and the SCAN Foundation. This report is “a unique ranking and policy tool” that aims to inform an audience from policy makers to the general public. Its focus is “the extent to which states have developed LTSS systems” that meet the needs of populations named in the report’s title, says its FAQ. The report uses five categories to measure performance: affordability and access, choice of settings and providers, quality of life and quality of care, support for family caregivers, and effective transitions (across LTSS and health care systems). The data used, from December 2019 for all fifty states and Washington, D.C., were the most recent available. The highest-performing states were Minnesota, Washington, and Wisconsin. “State performance remained largely flat” across most of the twenty-six indicators measured, but at least 40 percent of states “showed significant improvement” in five indicators, including “Nursing Home Antipsychotic Use,” “Supporting Working Family Caregivers,” and “Person- and Family-Centered Care,” the report says. In contrast, the indicator “Long-Term Care Insurance” showed “a significant decline in performance” in twenty or more states.
Also recently published was a December 2020 CHCS (Center for Health Care Strategies) Blog post, “How COVID-19 Affects Dually Eligible Nursing Facility Residents,” which is part of a series on dually eligible enrollees that is funded by Arnold Ventures. The National Academy of Medicine published a September 2020 commentary titled “Reimagining Nursing Homes in the Wake of COVID-19” by Terry T. Fulmer from the JAHF, Christopher F. Koller from the Milbank Memorial Fund, and John W. Rowe from Columbia University’s Mailman School of Public Health. Incorporating Long-Term Services and Supports in Health Care Proposals: Cost and Distributional Considerations, a May 2020 Urban Institute report, was supported by the Commonwealth Fund. Author Melissa M. Favreault presents three “stylized scenarios,” which did not exactly match “any specific proposal” as of that date but would markedly “expand the public role in financing LTSS relative to [then-] current law.”
Other Foundations
Other funders interested in caregiving include Archstone Foundation (California focus), Margaret A. Cargill Philanthropies (eight states in the Upper Midwest and Pacific Northwest, no unsolicited proposals), and the Health Foundation for Western and Central New York. Funders supporting projects in other aspects of LTC include the Fan Fox and Leslie R. Samuels Foundation (New York City). Goals of its Healthy Aging program include delaying the need for long-term institutional care and improving quality-of-life for older adults in residential LTC facilities. The strategies within the Elders funding priority area of the May and Stanley Smith Charitable Trust (Western US and British Columbia, Canada) include Caregiver Support and Quality Long-Term Care.
Key Personnel Changes
Lindsay A. Goldman
is the new CEO of Grantmakers In Aging. She succeeded John Feather, who has retired. Previously, Goldman was founding director of the Center for Healthy Aging at the New York Academy of Medicine.
Sarita A. Mohanty
is the new president and CEO of the SCAN Foundation. Most recently, she worked at Kaiser Permanente, where she was vice president of care coordination for Medicaid and vulnerable populations. She succeeded Bruce A. Chernof, who retired. Mohanty, a physician, will continue to practice internal medicine.
Compiled and written by Lee L. Prina, senior editor
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