From the Authors: The Scorecard’s Release in a 2020 Context
Advancing Action: A State Scorecard on Long-Term Services and Supports for Older Adults, People with Physical Disabilities, and Family Caregivers is the fourth edition in a series that began in 2011.
This report is a compilation of state data and analysis that is based on a vision of a high-performing system of long-term services and supports (LTSS). By using reliable, consistent, available data, it is designed to spark conversations that can result in actionable solutions at the local, state, and national levels—solutions that help older adults, people with physical disabilities, and their family caregivers live their best lives possible. Making that happen is the responsibility of both the public and private sectors, with advocates playing crucial roles. And consumers’ choices and actions ultimately affect a state’s LTSS system as well.
The 2020 Scorecard in Context of a Pandemic
Clearly, context matters. As we release this Scorecard, the nation is in the midst of a coronavirus pandemic (COVID-19) that is highly contagious and has particular severity for older people, those with multiple health conditions, and the direct care workers and family caregivers who support them. At the time of this writing, COVID-19 is perhaps the single greatest global concern, affecting every sector of life, including the economy, social interaction, health care, and—directly related to this Scorecard—LTSS system performance. Yet as a result of the sudden arrival and ongoing impact of the virus, it is outside the scope of this edition of the Scorecard. The most current available data, collected for this Scorecard, generally cover the period 2016–2019. These data were collected and analyzed in 2019, and so the Scorecard paints a picture of comprehensive LTSS system performance before the outbreak began. LTSS system performance in the areas of affordability and access, choice of setting and provider, quality of life and quality of care, support for family caregivers, and effective transitions remain both highly variable between states and critically important.
Scorecard Findings and COVID-19: Setting Expectations
It is important to consider certain elements of the Scorecard as it relates to the current pandemic.
First, the Scorecard does not contain any measures that are directly relevant to COVID-19 preparedness, impact, or response. This is not merely because the Scorecard data predate the emergence of the virus. Currently available COVID-19 measures are not complete or consistently comparable across states, LTSS settings, and source of payment. If it were possible to include COVID-19 preparedness or response measures in the Scorecard, they would be included in the Quality of Life and Quality of Care dimension. We have long called for better and more comparable data on LTSS users, services, outcomes, and especially quality—even considering the quality dimension to be incomplete in the last two Scorecards. The recent outbreak shines a stronger light on why more and better data are needed.
Second, the prevalence of COVID-19 cases, deaths, and other adverse outcomes in LTSS settings depends not only on LTSS system performance but also on a number of public health and societal factors, and the rate of community spread. Where there is significant community spread of COVID-19, there will be a significant impact on the LTSS system. That does not mean, however, that LTSS providers, policy makers, and other stakeholders are helpless in affecting the spread and lethality of COVID-19. Their role is crucial, even if the impact cannot be adequately measured at this time.
Third, the COVID-19 pandemic has put a national spotlight on one particular LTSS setting: nursing homes. With good reason, both the public and policy makers are concerned about the disproportionate impact on vulnerable individuals with underlying health conditions living in congregate care settings. However, most people receiving LTSS are not in nursing homes. LTSS users and providers in other settings are also highly vulnerable, and should similarly get special attention and public scrutiny. As states begin to rethink congregate care settings after COVID-19, other sources of LTSS, including home- and community-based services (HCBS) and family caregiving, may increase in importance.
The Scorecard’s Appeal: Reimagining Policy Solutions
The pandemic has drawn attention to LTSS challenges, especially in residential settings. We will need to learn from COVID-19 experiences, but it is the data in the Scorecard that will provide the foundation for understanding LTSS system reform today and tomorrow. State LTSS systems may look very different in a post-pandemic world, in ways that we cannot yet know. The Scorecard offers policy ideas and best practices that can help states achieve high performance as they rebuild and reimagine their LTSS systems going forward.
Some of the policies tracked in the Scorecard are particularly critical as the nation moves to relief and recovery post-COVID. For example, having paid sick leave and being able to use it for family caregiving becomes even more important, so that individuals can tend to their own health and the health of their family members without the risk of losing a paycheck. Similarly, states with policies enabling them to fully utilize their health care workforce offer consumers greater access to health care services and preventative screenings that can help individuals live healthy independent lives. Policies that promote direct patient access to nurse practitioners, working to the full extent of their education and training, also expands the health care workforce capacity to manage a future health crisis.
Lessons Learned and Policy Efforts Linked to Scorecard Findings
A fundamental shift to more consumer options for HCBS will be both essential to keep consumers safe and a financial necessity for states struggling with post-COVID budget deficits. Once the public health emergency is over, states will likely face enormous budget shortfalls and an arduous economic recovery. This will put new pressure on policy makers to offer consumers choices that keep them safe at home and, from the budget-conscious policy-maker perspective, at a fraction of the cost of institutional care.
Independent living options also require a robust health care and LTSS workforce. Several states took emergency action to expand health care access by enabling nurse practitioners to work to the full extent of their education and training during the pandemic. States that temporarily provided direct patient access to nurse practitioners will need to consider permanent policy solutions that ensure patients receive care when and where they need it. Additional emergency actions, such as creating centralized referral and information services or toll-free hotlines, can become the basis of a robust “No Wrong Door” system that helps individuals and family caregivers navigate LTSS options, including nursing home alternatives, regardless of where they first seek help.
Information Informs Improvement
Emergencies can illuminate the vulnerabilities in local, state, and national systems, for people of all ages. They can also present a renewed interest in data, trends, and best practices that can inform evidence-based decisions. This in turn can spark reflection and reassessment of long-standing policies and create the opportunity for an intentional redesign of a high-performing LTSS system.
Good data and accurate measurements are the foundation for meaningful improvement. The deadly consequences of COVID-19 in nursing homes add new urgency and demand for relevant and reliable data on infection, quality, and preparedness. These and other data are essential to inform evidence-based solutions and raise the level of LTSS system performance. The Scorecard remains committed to capturing the best available, reliable data on LTSS quality, including relevant and appropriate infection measures arising from the COVID-19 pandemic.
Historically we have envisioned the LTSS Scorecards, including this latest edition, as a tool to identify opportunities and catalyze improvement of state LTSS systems to meet growing future demand for long-term services and supports. Now more than ever, the 2020 Scorecard calls for advancing action to improve the lives of older adults, people with disabilities, and family caregivers.