COVID-19 has shaken communities worldwide. Despite strenuous efforts by caregivers and medical professionals alike, people needing long-term care and living in communal care settings have suffered gravely. According to a New York Times database, almost one-third of U.S. coronavirus deaths have been tied to nursing homes and other long-term care facilities. As a post-pandemic world nears, a new question emerges: What can be done to safeguard long-term care before the next public health emergency?
1) Understand the options.
Communal living — especially for populations with higher risk — increases the odds of disease transmission. However, nursing homes and communal care facilities are often the default for long-term care in the United States. One safe alternative is home and community-based services (HCBS), which enable people to receive long-term services and supports as they age or live with disabilities.
With HCBS, people can remain in their own homes and hire caregivers they know and trust. This approach is often called self-directed services or self-direction. People using self-direction decide who provides their long-term support services as well as when, where and how. From personal care to meal prep, transportation to skilled medical services, self-direction puts the person receiving services, or their designated family member, in control.
The Centers for Medicare and Medicaid Services (CMS) encourages HCBS. During the pandemic, HCBS has helped reduce transmission of COVID-19. Some companies specializing in self-directed care also found less disruption with HCBS. At GT Independence, a company that supports self-direction, COO Holly Carmichael reported no service interruptions and found more people choosing self-direction for safe and stable long-term care.
CMS also notes that HCBS provides gainful employment to family members or friends who are already providing informal care. Fortunately, self-direction is recognized in all 50 states, although programs and names vary; local aging and disability service offices provide guidance on getting started.
2) Follow and enforce CDC safety protocols.
Regardless of where someone chooses to receive care, strictly following CDC safety protocols helps to instill habits that protect the well-being of those receiving long-term support. Personal protective equipment (PPE), such as masks, should be used by people needing support and any caregivers who reside separately, whenever and wherever services are provided. Also, distancing people receiving services from caregivers who are unwell or who have been exposed to viruses minimizes risks.
As guidelines rapidly evolve, especially for those who are vaccinated, those receiving care and their caregivers are encouraged to visit the CDC website for the latest recommendations.
3) Encourage paid sick leave.
Caregivers typically don’t receive paid sick leave, which often has unintended consequences. Without paid leave, caregivers may feel financial pressure to work while ill. Not only may this slow their own recovery, but it increases the risk of exposing the person they care for to illness.
The Families First Coronavirus Response Act (FFCRA) has made it possible for people receiving long-term services and support to provide paid sick leave to their employees or caregivers due to pandemic-related reasons. Regular caregivers can address their health, protect their employer and avoid financial stress. At the same time, people receiving care can work with their self-direction partners to find substitute care. Such partners may maintain networks of vetted caregivers to ensure continuity of service and support.
The FFCRA has been a lifeline for many caregivers, and it has already been extended twice. Lawmakers should be encouraged to make paid sick leave a viable option for caregivers beyond the pandemic.
4) Prioritize HCBS options.
HCBS programs have proven successful in terms of quality of life and cost effectiveness, but caregivers and programs need recognition and support to ensure people understand their options. A 2018 Bureau of Labor Statistics report indicated the average healthcare support worker made $28,720, and a Paraprofessional Healthcare Institute study shows homecare workers average $13,300 a year. Increased pay would help retain and attract qualified caregivers. Direct-support professionals are needed to reduce HCBS waitlists for safe and effective services.
More people are experiencing the positive impact of HCBS. Prioritizing this option can reduce strains on local healthcare systems while reducing stress and financial burdens on families. Funding can help inform people of their choices, get them enrolled and expand benefits for participants. It can also help cover transition costs from institutional settings to an individual’s home, helping remove the cost barrier.
The American Rescue Plan has allocated more funding for HCBS programs nationwide and participants and caregivers have the opportunity to influence their state and local representatives on how to best improve the program in their areas.
COVID-19 took long-term care providers by surprise. By learning from experience and working to expand access to HCBS, families and caregivers will have better choice and control to minimize impacts next time.