Turning 50 seems like a good time to review what one has accomplished and to assess where to go next. As long-term services and supports (LTSS) care management reaches this milestone, a similar reflection seems appropriate.
While the aging and health services delivery system has experienced dramatic changes over the past few decades, care management remains a critical component in the provision of services.
In this issue of Generations, we will look back at the roots of care management and address questions about its future in our uncertain world. We do not know what the future will hold, but we do know that it will differ from today.
Thinking about what care management can be is an important strategic step for the aging network. Because tomorrow will come, whether we are ready for it or not.
From Case to Care Management
As we start our reflection about care management let’s spend a moment on the name itself. In the early days, the term case management was widely used, and occasionally an advocate would stand up at a conference session and remind the audience that no one wants to be considered a “case” nor do they want to be “managed.”
At that time, I was largely agnostic about the terminology debate. But in 2000, while attending a professional meeting in Washington, DC, I visited the Smithsonian, where there happened to be an exhibit on the ten-year anniversary of the Americans with Disabilities Act. In the middle of the ADA display was a T-shirt with the words, “I am not a case, and I don’t want to be managed.” It occurred to me that by the time the Smithsonian weighs in, it means change is past due.
We have chosen to reflect that revised language in this issue. Given the importance of family and friends in LTSS, referring to the caregiving unit as a case is yet another reason to replace the “case” terminology.
From the early days of care management there was a question about whether a care manager, separate from the provision of services, was necessary. Proponents of a care-managed system argued that providers had an incentive to prescribe their own services. As one care management advocate said, analyzing the dynamic, “When you go to the shoe store, their job is to sell you shoes.”
Supporters of care management contended that having an independent professional to assess and discuss with the consumer and family what was needed, and then arrange and monitor those services, was critical to a quality system. On the other hand, service providers argued that it was better for the consumer to have a one-stop experience with a provider assessing and arranging for a service. They viewed care management as an added layer of costly and confusing bureaucracy.
Across the nation, local and state battles ensued; some resulting in pro care management legislation and some in policy decisions to exclude funding for a separate care management function. Despite the long-standing debates, care management is a core element of today’s health and human services systems, particularly in the LTSS arena. In this issue we will address two big questions: Why has care management endured? And, How will it evolve in the future?
Before we shift our attention to LTSS, it is important to recognize the many faces of care management. Care management has become commonplace in mental health, hospitals, managed care and health insurers, child welfare, corrections, and a host of other health and human service endeavors. While articles in this issue will cut across such diverse areas as health, behavioral health, managed care, and housing, our emphasis will be on older people with chronic disability and LTSS care management.
The Care Management Evolution
More than thirty years ago, our colleague Rosalie Kane, who we memorialize in this issue, guest edited an issue of Generations on the new and growing practice of case (care) management. Today’s system is even more complex than the one care management was attempting to fix in the 1970s and 1980s. There are more funding sources, more and different types of services, and more delivery systems than we could have even imagined thirty years ago.
The population served today is much more racially and ethnically diverse, requiring care managers to be culturally and linguistically attuned to the individuals they serve. And there are an increasing number of individuals with dementia and behavioral health challenges, making the job of care manager ever more complex.
Coupled with these changes is the development of an entirely new residential industry, assisted living, and the transformation of nursing homes to being both-long and short-term care providers. The funding shift from long-stay institutional care to home- and community-based services (HCBS) has been nothing short of dramatic, with many states now spending more Medicaid dollars on HCBS.
Today’s LTSS consumers have fewer family supports and many more are living with higher levels of frailty than ever before. This complexity means that the need for care managers to help consumers navigate the health and long-term services delivery system is more necessary now than at any time in our modern history.
The tasks included in care management, the types of professionals serving as care managers (and their training), and the numbers of individuals served through care management all vary dramatically. Care manager scope and authority can range from delegated servicing authority and monitoring responsibility for acute and long-term services, as exists in the financial alignment models of the dual demonstrations, to coordination tasks with limited or no authority to allocate funds.
A robust, coordinated system that includes a targeted care management component focused on individuals before a crisis should be a key element of that response.
Medicaid waiver LTSS care managers, with authority for an array of HCBS, represent an intermediate strategy that is quite common in the LTSS system. In some models, care management functions are delegated to multiple professionals who focus on a particular piece of an individual’s care (e.g., the use of registered nurses to address health and acute care services and the use of social workers to address LTSS needs.)
Other models use one fully delegated care manager with responsibility for managing and monitoring health and LTSS services. The job of care management varies so dramatically that we see caseload sizes ranging from forty to 250. Efforts to better define care management practice began in the 1990s, when Joan Quinn, also remembered in this issue, led a group to develop practice standards for the growing area. Despite these efforts, tremendous program variation in the practice of care management continues.
Funding for Care Management
Today care management is paid for via an array of funding sources. The largest payor continues to be the Medicaid program, as care management is a staple of the HCBS waiver programs across the nation. Private LTSS care management, which has been around for more than thirty years, receives funding from individuals and family members and from private long-term care insurance companies. Care management also exists in state and locally funded home care programs across the nation. Hospitals, physician practices, and other healthcare organizations have begun to employ care managers in an effort to enhance transitions across health and long-term services settings. Some recent work has evaluated the impact of aging network service coordination and care management on community health outcomes, finding that communities with robust care coordination have better health outcomes (Brewster et al., 2020).
Ironically, despite the expanded role of care management, the role of care managers is under substantial threat. Privately funded care management has not reached the level of growth that was initially expected. Often families make the decision to allocate resources to hands-on services rather than spending money on care management, which often becomes a family responsibility.
As managed care has moved into the LTSS space with a heavy focus on efficiency, some of these health plans have expressed concerns about the return on investment of the care management function. Unfortunately, while there is a lot of anecdotal evidence about the importance of care management, limited empirical data exists on its effectiveness. While there were a large number of studies evaluating care-managed HCBS, culminating in the National Channeling Demonstration and Evaluation (Kemper et al., 1987), these studies did not separate out the effects of service provision and care management. Questions about scope, authority, caseload, professional training, approaches and quality monitoring have not been rigorously studied, as noted by the article in this issue on care management evaluation.
Looking Ahead, Seeking Answers
Given our history and all the changes that have occurred in the LTSS system, the $64,000 question is: What is the future of care management? Will it remain the bedrock of the HCBS system? Will it lose its identity and value in a managed care world? What organizations will be in the care management business in the future? What will happen to the traditional area agency and nonprofit care management organizations in the changing health and long-term services system?
This issue of Generations is designed to help us think about these critical questions and is organized into three sections. The first section describes the practice of care management and what we know about it. The second section takes on the many arenas of care management practice. The final set of articles focuses on the future, building on the earlier two sections to inform us about where care management could be heading.
Of course, it is important to emphasize that there are a number of policy and program decisions that will influence the design, development, and success of care management in the future. The current LTSS system is driven by the Medicaid program. Older individuals with severe disability who qualify for Medicaid-funded HCBS can rely on care managers for assistance in navigating the complexities of the health and long-term services system. However, the vast majority of older Americans (more than nine in ten), and even many with severe disability, are not eligible for Medicaid support.
The current approach is essentially designed to serve individuals after their health and long-term services needs have resulted in impoverishment and, in many cases, relocation. Efforts to support individuals and families before a health crisis have been largely absent in the U.S. system. While some state and locally funded LTSS programs exist across the nation, they remain the exception. The statistics on how many older people are likely to need long-term assistance at the height of baby boomer aging are well known, what is not clear is how the nation can and will respond to this challenge. A robust, coordinated system that includes a targeted care management component focused on individuals before a crisis should be a key element of that response.
Also, to achieve system change it will be important to provide empirical data on the outcomes of its performance. The pressures to develop more efficient delivery systems are going to remain. States and the federal government are overwhelmed with the challenges associated with delivering high-quality and effective health and long-term services to a growing older population. The integrated care demonstrations and the financial alignment models designed to link Medicare and Medicaid services were implemented on a large-scale basis with little to no evaluation studies to support their design. In a highly charged political world, actions based on ideological beliefs have become the norm, but our future challenges are too great to base system decisions on beliefs rather than on data.
It is our hope that this issue of Generations contributes to the discussion of care management and its role in future delivery systems. The articles offered here provide a thoughtful reflection of where we have been and where we can go in the future. The shifting landscape that we have experienced since Rosalie Kane’s issue more than thirty years ago is considerable, but the changes we will see in the next few decades will be far greater. I do think care management will be part of the solution to our many system challenges, but we may have to wait until the 2050 care management issue of Generations to know for sure.
Robert Applebaum, PhD, directs the Ohio Long-Term Care Research Project and is a professor in the Department of Sociology and Gerontology, and a Scripps Research Fellow at Miami University in Oxford, Ohio.
Brewster, A. L., et al. 2020. “Linking Health and Social Services Through Area Agencies on Aging Is Associated with Lower Health Care Use and Spending.” Health Affairs 39(4): 587–94. doi.10.1377/hlthaff.2019.01515.
Kemper, P., Applebaum, R. A., and Harrigan, M. 1987. “Community Care Demonstrations: What Have We Learned?” Health Care Financing Administration Review 8(4): 87–100. Reprinted Institute for Research on Poverty, University of Wisconsin Reprint Series. Reprinted National Center for Health Services Research.