While disrupting all aspects of life around the world, the COVID-19 pandemic has had an enormous impact on the long-term care delivery system in this country with long-term care facilities being disproportionately impacted by the pandemic. Nursing homes and senior living communities were in the difficult position of needing to keep patients safe while continuing to provide care and mitigate the risks of infection for both patients and staff.
We asked a team HMA colleagues with vast expertise across the continuum of long-term care to reflect on the initial pandemic response and share insights about the crisis, the response, and how to move forward. These experts have in-depth knowledge about skilled nursing and long-term care facilities, home care, supporting informal caregivers, workforce development, and infection control best practices.
Jody Gastfriend, LICSW, Principal, Boston, MA – A licensed clinical social worker and a national expert in senior care, Jody previously served as vice president of senior care with Care.com. Her range of leadership positions has included serving as chief operating officer for a Medicare-certified home health care agency, director of social services and case management in a community hospital, consulting to home care and post-acute care providers, and launching and scaling successful employer-supported eldercare programs. She is the author of the book, My Parent’s Keeper, The Guilt, Grief, Guesswork and Unexpected Gifts of Caregiving, as well as a featured expert and regular contributor to the AARP, national media outlets, and professional industry publications.
Barry J. Jacobs, MD, Principal, Philadelphia, PA – Dr. Barry J. Jacobs is a noted clinical psychologist and family therapist whose passion for enhancing support for family caregivers led him to author several books and dozens of articles on the topic. He also presents and speaks nationally and internationally to organizations, associations, and providers. He is the author of The Emotional Survival Guide for Caregivers—Looking After Yourself and Your Family While Helping an Aging Parent and co-author of AARP Meditations for Caregivers—Practical, Emotional and Spiritual Support for You and Your Family, and Love and Meaning for Couples After 50.
Juliet Marsala, MS, MBA, CRC, CPRP, Senior Consultant, Philadelphia, PA – A transformational leader of community-based organization (CBO) operations, Juliet has worked to improve the efficiency of social services for vulnerable populations in home and community-based services (HCBS) programs and long-term services and supports (LTSS). She founded and served as CEIO of Supports Your Way, Inc., a successful CBO, that provided complex care management and advocacy services for aging persons and people with disabilities. In addition, she previously served as vice president of community health and long-term supports for JEVS Human Services, a nationally recognized non-profit supporting underserved populations, as well as launched and ran her own consulting practice.
Susan Tucker, CPA, Principal, Tallahassee, FL – An expert in state, local, and national LTSS programs, Susan has helped develop plans and resources to respond to elder care needs and helped clients proactively meet compliance requirements and regulations. She previously served as interim and deputy secretary of the Florida Department of Elder Affairs where she oversaw state and Medicaid waiver programs serving elder Floridians. In addition, she served in vice president and CFO roles for organizations focused on community-based programs, serving those who are dually eligible for Medicaid and Medicare, fiscal management, and program development and improvement for aging individuals and those with disabilities.
What were the initial and subsequent issues specific to long-term care at the onset of the COVID-19 pandemic?
Barry Jacobs: A major issue was staffing, which was inadequate in skilled nursing facilities (SFN) and in-home care prior to COVID-19 and continues to be a crisis. I would add that the custodial model of LTSS has performed poorly throughout this crisis.
Juliet Marsala: In addition, workforce shortages were exacerbated. The U.S. Department of Health & Human Services acknowledges that “insufficient personal protective equipment (PPE), fear of exposure to COVID-19 infection, lack of COVID-19 testing, required long hours of work, reliance on public transportation, lack of accessible childcare, competing family obligations and potential infection risk to family members” were key drivers behind increasing the availability of this critical workforce. The essential care that direct care workforce provide to the health system was not recognized as a high priority among many competing priorities.
What were some of the issues facing in-home providers specifically?
Marsala: There was a lack of public recognition and speed to provide essential information for home care agencies and other non-health-related home and community-based service providers. Home care agencies had great difficulty obtaining personal protective equipment (PPE) and becoming included in the essential worker categorization to be prioritized for PPE to continue their work with the most vulnerable members of our community.
The lack of PPE increased the risk of COVID-19 transmission in the home care industry. For example, the Centers for Disease Control and Prevention (CDC) created confusion and apprehension for workers and service recipients to continue to give and receive care in homes. Unclear roles and responsibilities created additional delays in a coordinated approach for public health departments, managed care organizations (MCO), and providers responsible for disseminating and paying for PPE for service recipients.
Direct care workers were not uniformly and publicly accepted as “healthcare” workers on the same essential level as licensed professional healthcare workers. Some home care and community providers and direct care workers did not recognize that they were essential “healthcare” providers because of the emphasis on the non-clinical nature of their Home and Community Base Services (HCBS) within the long-term services and supports (LTSS) and larger health system. However, that understanding has begun to change. For example, some direct care workers were stopped and threatened with citations and criminal charges for traveling during lockdowns.
The 1135 Waivers enacted by states did much to support in-home providers, however, there was a lack of information about how to apply the 1135 Waivers in day-to-day operations. Some HCBS put into action their interpretations of the posted 1135 Waivers only to find out their understanding of the intent was misaligned.
Jody Gastfriend: Early in the pandemic, many home care providers experienced a significant decrease in demand for home visits due to fears of infection and home care aides being unavailable for work. Home care providers had to implement more comprehensive infection control policies, access personal protective equipment and train their workforce on these new protocols.
As volume increased, the challenge of workforce shortages, which existed prior to the pandemic, were intensified. Direct care workers were particularly vulnerable to the impacts of COVID-19 because they had ongoing exposure to clients who may have been infected with the virus and often live in communities with high rates of COVID-19. The majority of direct care workers are women of color who are financially insecure, earning a median hourly wage of $12.80.
To minimize risks to direct care workers as well as improve quality of care, many home care providers implemented innovative technology strategies, such as remote patient monitoring, virtual visits, remote office teams and medication management and adherence systems. Leveraging tech-enabled tools to augment in-person direct care is a trend that is likely to increase as providers consider how best to deliver care in a post-pandemic world.
The majority of people prefer to receive care in a home or community-based setting. During the pandemic, the Centers for Medicare and Medicaid Services (CMS) provided regulatory waivers designed to increase access to home health care for patients needing more complex medical and rehabilitation care.
The impact of COVID-19 has served to increase the demand for home-based care and further demonstrates that home care can be a high quality and cost-effective option to an institutional setting.
What challenges were specific to care facilities?
Susan Tucker: Many factors contributed to nursing homes becoming COVID-19 hotspots, including lack of experience and knowledge about the COVID-19 virus, workers who were asymptomatic carriers, the highly infectious nature of the virus, and the vulnerability of a nursing home population who are mostly elderly and have multiple chronic conditions.
Nursing home staff were serving a large number of residents and often working across various facilities. Additionally, residents’ use of common areas that promote residents’ socialization inadvertently contributed to the spread of infection.
The COVID-19 pandemic highlighted nursing home safety and infection control as critical public health issues. The pandemic’s outsized impact on residents and staff in SNF underscores the immediate need to re-examine the relationship between the physical environment and infection control, health outcomes, quality of life, and overall resident and staff safety.
HMA was engaged to take a deep look at one central aspect of the nursing home physical environment, room occupancy. The owner of a nursing home chain in Michigan hired HMA to highlight research and draw attention to the need for single resident rooms in nursing homes. HMA’s report found compelling evidence that single rooms in nursing homes have numerous benefits for both public health and residents’ experience. The authors conclude that transitioning from multi-resident rooms to single rooms should be a component of person-centered nursing home reform.
How did care differ for aging populations vs. those with disabilities?
Marsala: The COVID-19 pandemic brought to the forefront complex ethical issues about healthcare equity that greatly impacts the aging, but more so the disabled population. There was significant debate about the disabled population’s access to care, prioritization, and medical care rationing. People with disabilities were at risk of being evaluated by medical providers as having a “low-quality of life” and faced healthcare rationing when hospitals reached total capacity levels. People with disabilities appeared more vulnerable in this scenario than the aging population. In some states, disability was a disqualifying factor in triaging care.
The Department of Health and Human Services issued a call to action to address healthcare discrimination and protect people with disabilities. We see examples of this in Oregon, where denial of care to people with disabilities has led to legislative and policy changes. While this was also true for some aging populations, there appeared to be an increased vulnerability for a more significant percentage of people with disabilities.
People with disabilities, and especially those with mobility impairments, had great difficulty attending to their everyday healthcare needs and accessing COVID-19 testing sites. One barrier was access to accessible transportation as options were temporarily halted during shutdowns except for emergency medical transport which did not generally include traveling for COVID-19 testing. Direct care for people with mobility impairments requires proximity much less than social distancing guidance which also presented problems as adequate PPE was not always available. As a result, some people chose to go without daily care, which increased other health risks.
Talk about the mental health impacts for patients and residents as well as staff.
Gastfriend: The impact of the ongoing coronavirus pandemic on long-term care facilities has been devastating. According to state data reports, 40% of COVID-19 deaths have come from nursing homes and assisted living communities.
The pandemic’s toll on those living with Alzheimer’s disease and related dementias has been especially brutal. Increased social isolation due to visitation restrictions has taken an enormous toll on the physical and mental wellbeing of residents. Many experts believe that the lockdown in long-term care facilities fueled a mental health crisis that exacerbated the devastating impact of the pandemic on the most vulnerable.
In addition, family caregivers have experienced significantly increased levels of stress. They’ve had difficulty staying engaged and getting up-to-date information about their loved one’s wellbeing and have often had to rely on virtual, rather than in-person, visits.
Long-term care facilities have been faced with the enormous challenge of keeping residents safe while addressing the emotional impact of residents who may feel abandoned and isolated.
Despite these challenges, many long-term care facilities have used creative means to maintain connectivity and contact with loved ones, using video conferencing platforms, outdoor visits, and even window events and get-togethers. Leveraging technology to maintain vital contact may have an ongoing positive impact for long-term care facilities, helping family members and residents stay connected when in-person visits aren’t practical or possible.
Talk about hospital transfers and how that impacted care and outcomes.
Jacobs: Initially, at least in Pennsylvania, many hospitalized COVID-19 patients were discharged to skilled nursing facilities (SNF) to free up hospital beds. Unfortunately, the SNFs were ill prepared for practicing effective infection control with these patients. The result was that COVID-19 spread rampantly through these facilities, causing illness and death. This has since been remedied.
What are lessons learned? How can facilities and care providers prepare for future outbreaks of infectious diseases?
Jacobs: Future outbreaks would be better managed by designating specific facilities to care for individuals already infected and then increasing staffing at those facilities. This would require a level of coordination and cooperation among facilities which is not yet practiced and would require engaging departments of public health to play a more directive role.
As long-term care providers move to the post-vaccine world of COVID-19, the time is now to take action and prepare for the next outbreak or emergency and better prepare to keep facilities, staff, and most importantly, residents safe. HMA has worked with organizations to examine data and reports, develop strategic plans, and provide technical assistance to providers across the spectrum of caregiving.
Marsala: TheCOVID-19 pandemic has made it clear that people prefer to receive care in their homes and communities versus institutional settings.To better prepare for future outbreaks, we need to ensure that the community direct care workforce is identified and incorporated into state and national emergency response planning. Steps need to be taken to remove the barriers to PPE access, childcare, and transportation. Alternative or supplemental workforce options should be identified, and emergency response funding allocated. Dedicating a direct care and community workforce team lead on federal or state emergency response teams to coordinate this area of need may improve coordination outcomes. The permanent expansion of telehealth options will allow health professionals to continue providing healthcare and wellness checks for the aging and disability communities through future outbreaks.