Long-term Services and Supports (LTSS): A Growing Challenge for an Aging America

Most of us do not think about performing the everyday tasks of living, nor can we even imagine ourselves with a disability. But for 11 million older adults, assistance with tasks of daily living such as dressing, bathing, housekeeping, and shopping have become a part of their life (Freedman & Spillman, 2014). Since the majority of Americans do not anticipate the need for long-term services and supports (LTSS), most of us are not prepared financially, psychologically, environmentally, or socially for a long-term disability. Yet as we advance in age, the likelihood that we will experience a moderate or severe disability requiring assistance increases. For example, the proportion of older people with one activity limitation who report receiving assistance increases from less than 16% for individuals aged 65–69 to more than 75% for the population aged 90 years and older (Freedman & Spillman, 2014). Because most Americans do not plan for the likelihood that we will need formal assistance because of a disability, many of us (almost 2.1 million people over the age of 65 in 2010) (Medicaid and CHIP Payment and Access Commission [MACPAC], 2014) end up using the public assistance Medicaid program as the safety net for LTSS. With Medicaid approaching one-quarter of the typical state’s budget, reliance on Medicaid has become an increasingly challenging issue for states. As the older population with disabilities increases—projected to more than double between now and 2040—today’s challenges will become tomorrow’s crisis unless as a nation we plan and prepare for the potential changes. In the last 25 years, the United States has made significant progress in reforming the LTSS system. The major criticisms of the past such as a lack of community-based alternatives, perverse public financing incentives, unsafe and substandard nursing home care, and a lack of data to assess quality have received considerable attention and resources. Despite good progress, the system is not where it needs to be. Given the demographic challenges of the future, the road forward may be even more difficult than the path already travelled. As the older population with disabilities increases—projected to more than double between now and 2040—today’s challenges will become tomorrow’s crisis unless as a nation we plan and prepare for the potential changes. We have made considerable strides in creating a more balanced system of LTSS funded by the Medicaid program. A number of states have done what was literally unthinkable even a decade ago: spending more money on home- and community-based services than institutional care (Eiken et al., 2014). Despite this progress, we still have a major mismatch in our delivery system. Most of our federal and state spending on LTSS is allocated to very low-income elders with severe disability who receive assistance through the Medicaid program. However, only about 10% of older adults living in the community receive Medicaid and have access to Medicaid-funded home- and community-based services. On the other hand, 2/3 of older adults in nursing homes receive Medicaid assistance (Hagen, 2013). Research has demonstrated that states that have developed a more extensive network of government-funded supportive services experience lower rates of institutionalization (Hahn, Thomas, Hyer, Andel, & Meng, 2011; Mitchell, Salmon, Polivka, & Soberon-Ferrer, 2006; Mor et al., 2007; Muramatsu et al., 2007; Pande, Laditka, Laditka, & Davis, 2007; Thomas, 2014; Thomas, Keohane, & Mor, 2014; Thomas & Mor, 2012, 2013). However, for those who do not qualify for Medicaid and given that only 7%–8% of older Americans obtain long-term care (LTC) insurance (Freundlich, 2014), the majority of expenditures on these community-based supportive services is paid for out-of-pocket by older adults and their families. When personal resources are exhausted (and in many cases become so after an older adult experiences a long-term disability), they must rely on the government-funded system for support (Wiener, Anderson, Khatutsky, Kaganova, & O’Keeffe, 2013). Creating greater and more affordable access to supports for Americans who have moderate resources and severe or moderate levels of disability is the missing link in the current system. It is estimated that informal caregivers voluntarily provide three quarters of all long-term care to elderly friends and family members. In 2009, the unpaid care that was provided by 42 million family caregivers was valued at approximately $450 billion dollars (Feinberg, Reinhard, Houser, & Choula, 2011). However, the configuration of the modern family has made caregiving an ever more challenging activity. In addition, family caregivers are no longer solely assisting in instrumental activities of daily living (preparing meals and paying bills) and activities of daily living (helping to bathe and feed); rather, many are providing complex medical care to their older loved ones (Reinhard, Levine, & Samis, 2012). A survey of family caregivers found that almost half (46%) of all informal caregivers were performing medical/nursing tasks for family members with multiple chronic physical and cognitive conditions. These tasks included things like assisting with medications, helping with assistive devices, providing wound care, helping with toilet use and incontinence care, and assisting with medical equipment. In addition, many caregivers performing these complex tasks report teaching themselves how to care for their loved ones. Family caregivers are a critical element of community living for many older adults; and despite the fact that these caregivers shoulder the bulk of LTSS, our support for caregivers is extremely limited. The technological innovations that have occurred in the last two decades have been remarkable. Technology to detect falls, monitor an individual’s medical condition, monitor a person’s day-to-day activities, and assess mobility patterns in the home have already become part of daily life. New developments, such as self-driving vehicles and the personal assistant robots, are being researched and tested. How can these technologies be used to help older people remain independent and to enhance their quality of living? Although there has been extensive research on the development of new technology, applied studies focusing on how such innovations can and will be used by older people has been limited. In particular, understanding how older people with disability and their families can use technological advances has received little attention. As the older population with disability doubles over the next 25 years and there are fewer family members to provide needed support, technological assistance through robotics, monitoring devices, and adaptive aids could represent an important element of our efforts to enhance and maintain independence for this growing population. It is critical that we enhance the quality and efficiency of the current system of LTSS. Research on quality and efficiency of LTSS has been difficult to conduct, in part because quality has been challenging to define and measure. But if we are to create an efficient and effective system, better research is critical. We do have some good examples of research that have been used to assess and improve programs and policies. For example, research findings from the National Cash and Counseling Demonstration found major improvements in quality of life and lower rates of nursing home utilization for individuals who participated in self-direction of their care (Carlson, Foster, Dale, & Brown, 2007; Simon-Rusinowitz, Loughlin, Ruben, Garcia, & Mahoney, 2010). Using this work, the majority of states have designed self-directed programs to enhance the LTSS delivery system (Sciegaj et al., 2014). Despite some success, there is still much we do not know about how best to deliver LTSS in a variety of potential settings. Efforts to innovate, which are critical to developing the system of the future, face challenges of research lag, where the research falls behind the new program innovation. As an example, many states currently are allocating resources to integrate acute and LTSS for older people with disabilities (Musumeci, 2014). The dual demonstrations are attractive to states because of concerns about quality problems between the acute and long-term systems and because of the high cost of care for these individuals. However, the research behind the outcomes of these interventions is quite limited. Making sure that the research keeps up with rapid policy changes in health and LTSS is a growing challenge. Workforce challenges continue to plague the LTSS industry. Turnover rates remain high, recruitment and retention rates remain abysmally low, and concerns about the quality of workers and the quality of the work environment have been consistent. Compounding these issues, we face a dramatic shortage of direct care workers in the coming years with the demand for these positions expected to increase by 70% between 2010 and 2020 (Paraprofessional Healthcare Institute, 2013). However, the number of direct care workers providing LTSS is only projected to increase by 20%. Innovative work in the LTSS quality arena consistently indicates that a quality workforce is the critical determinant of a successful consumer experience. Our nation’s long-running debate surrounding the Affordable Care Act is a prime example of our lack of consensus on the question of individual versus governmental financial responsibility for health care. Our lack of agreement about how to finance LTSS may be even more complex than the acute health care challenges. In health care, there is a large employer presence and an agreement that older retirees should have access to health care through Medicare. Thus, the argument surrounding the Affordable Care Act (ACA), while critical and intense, focused on the 15%–20% of the population without any or adequate insurance coverage. However, in the LTSS arena, more than 90% of the U.S. population does not have LTSS coverage until such time as they have depleted their assets and become eligible for Medicaid. There is so little consensus on this topic that the Bi-Partisan Commission on Long-Term Care could not agree to make any financing recommendations in their 2013 report to Congress. With no employer coverage, a limited private market, and no social insurance, combined with limited savings and access to pension plans, the vast majority of Americans are woefully unprepared financially for a disability in later life. The irony of LTSS is that the American spirit of individual responsibility is eroded for older people with disability, as two-thirds of nursing home residents die as impoverished Americans. A quote attributed to Winston Churchill appears applicable to U.S. policy related to LTSS: “You can always count on Americans to do the right thing - after they have tried everything else.” Historically, the United States developed a paradoxical system that required individuals and families to be almost completely responsible for coverage, relied on a public assistance approach that only could be used after an individual had become impoverished, emphasized institutional care over in-home services regardless of consumer choice, created a system that emphasized professional decision-making over consumer wants, and focused on immediate, rather than long-term decisions for individuals and society. We offer six recommendations to address these long-standing challenges. The Older Americans Act (OAA) is the major vehicle for the organization and delivery of social and nutrition services to older adults and their caregivers. Employing a network of aging service providers to deliver evidence-based programming, the OAA promotes independence and preserves dignity for older Americans. While Medicaid has been successful in rebalancing its distribution of services to become the largest program delivering community-based in-home supportive care, its services are only available for very low-income, severely disabled individuals. Because the OAA supportive services are not means tested and are available to individuals aged 60 years and older who demonstrate need, they provide a safety net for older adults who require assistance but do not qualify for Medicaid benefits. Previous research has suggested that increasing access and utilization of OAA services, particularly personal care services (Thomas, 2014) and home delivered meals (Thomas & Mor, 2012, 2013), offers the potential to provide real savings to state Medicaid programs by keeping dually eligible low care residents out of nursing homes. Under the current system, a high proportion of older people with disability end up on Medicaid. With the doubling of the older population with disability over the next 25 years, it will be critical to develop a system that helps individuals live independently without solely relying on Medicaid assistance. Therefore, expanding services and carefully targeting these services has the potential to result in savings, particularly if we can prevent this group from spending down and becoming Medicaid-eligible. We recommend that a conversation and investigation take place to determine who benefits from these programs and which services are leading the way in providing community-based supports that both help caregivers and allow older adults to remain in their homes. With this information, the Administration and Congress can understand the significance and reach of supportive services for older adults and work to supplement and sustain proven and effective programs. With unpaid, informal caregivers playing a vital role in maintenance of community living for older adults and thereby reducing reliance on state Medicaid programs, we need to have a national focus on insuring that caregivers receive the adequate supports necessary to continue to provide the significant majority of LTSS. Caregiver stress has been identified as an important predictor of a care recipient’s nursing home placement (Spillman & Long, 2009) and an important independent risk factor for caregiver morbidity and mortality (Fredman, Cauley, Hochberg, Ensrud, & Doros, 2010; Schulz & Beach, 1999). Therefore, we need to make supports available to reduce caregiver stress and caregiver burden. In addition, caregivers surveyed about their caregiving duties suggest that access to training would greatly help to allow them to continue to confidently care for their older loved one (Feinberg et al., 2011). If the health care system is going to continue to rely on these unpaid, untrained caregivers to provide more complex care to older adults needing LTSS, adequate supports and training must be made available. The amount of resources allocated to caregiver support is quite limited. Although the National Family Caregiver Support Program was added to the OAA, these funds represent a fraction of LTSS expenditures. For older people with disability, families are a critical element in helping individuals to maintain independence. Providing adequate resources that are designed to support and not supplant family efforts will be one of the most important program design components faced over the next decades. Older Americans have expressed a strong preference for remaining as independent as possible for as long as possible. The proliferation of technologies designed to help people age in place presents a tremendous opportunity to meet this goal (Cheek, Nikpour, & Nowlin, 2005). Improved public support for such initiatives can be achieved in two ways. First, an expansion of research and development funds is needed to assist University and research units in collaboration with community organizations working with older people and businesses to develop practical and usable products. Innovations that allow individuals with disability to remain at home independently can have a considerable impact on the future care and budgetary challenges faced in this arena. Such research should not only focus on the and cost of the but should an understanding of the impact on and potential concerns that are to the older adult population. it is critical to the policy and for the development of new for care a good example of the challenges and a new The that a could reduce the number of to an individual’s home to monitor such as or other by care could lower while increasing the number of However, there are and for what is where it is and what delivery are the health care and private insurance have their of and policies. As more technologies to or enhance for older adults, we are to these and systems become even more Therefore, we must more research and that the of new technologies and to can be used to continue to the for & Medicaid and state to their to evidence-based Given the that many of these technologies have the potential to improve care and reduce we recommend of new health technologies and the development of for those proven to be and As the nation and evidence-based LTSS, we need to have a better way to and the quality and outcomes with of services. It is important that we such as the number of in programs, the amount of services and individual and program we should to and on and of care and the of and Our current LTSS system is by and health that may be and attractive to and policy health health and or health by LTSS such as maintenance of community living of health care and and It is that we assess the impact of LTSS on of and as as its to a of and a critical of LTSS is the it has to family members and family caregivers. that assess caregiver physical and financial are to and provide of LTSS quality and these will become increasingly important in states LTSS to care Because LTSS are very a variety of levels of and we should that state programs are being and that their progress is given so that we can make In the of a of national LTSS states have developed their approach to quality in in it difficult to a path the quality of LTSS programs. Therefore, a way to this information, and and their of delivery systems is There is no to the In many and of the needed health care quality of caregiver already possible approach is to LTSS outcomes and quality from states this of work, the research and national to improve LTSS quality and There is a of that can be and by as we can a of to the quality and outcomes of LTSS. have already been in place for LTSS to require evidence-based The for the required that and programs funded of the OAA must be even more will be used to determine if a program is As we are to continue to required in program plans, and it is important that the Administration continue to offer to and in the best to their programs. We recommend that LTSS providers to how they can outcomes and impact to that they are their and their place in the delivery of LTSS. We recommend that an be made in workforce development to a and LTSS workforce of workers to meet the growing care positions are by low and in 2012, the for all direct care workers was less than the for all U.S. workers of and a of nursing home workers and more than a of working in home care health coverage (Paraprofessional Healthcare Institute, 2013). These low and lack of health care coverage the direct care workforce are particularly given their of and high rates & 2011). While increasing the and benefits of direct care workers will help providers with other organizations to the demand for such as Medicaid and Medicaid have to these increasing their However, these programs have been to the increasing demand for direct care workers (Paraprofessional Healthcare Institute, Our is that the and the with the long-term care continue to work to improve and health care in to increase recruitment and retention of direct care Despite the of and the of the work environment and the training and support provided for workers has proven to be critical. and rates even the market, that are critical to quality and evidence-based on and is critical. if and benefits there will always be an of that will be important to a quality Therefore, we recommend that efforts to improve federal and increase for the direct care workforce are The on the financing the national debate about private versus public While we could the positions of both it appears that group will to the It is our that the challenges faced in the LTSS financing arena over the next years are so that the will require an of individual an and responsible private and a financing and role of the and the and Act a of the Affordable Care was an to this of In our was included in the for the it the of the it was for the it was not However, it an to individuals to prepare for their long-term needs in the of a national program. as the private has become in and now would have the The for was an that the approach would not in to this the fact that Medicaid already supports almost two-thirds of nursing home dollars could be used to support or they could have been used to support an insurance program for some of those relying on Medicaid have not made the in a long-term care insurance nor are there private to develop a policy of the limited policies. Although is behind if we are to to the LTSS financing challenges a will be The LTSS challenges of an aging are Our is that we for a about the of LTSS system that we will all have to access to at some and how we can most cost In the and of surrounding LTSS, the number of individuals and families that will need LTSS both now and in the future, and the that this system will have on private and public resources that the on the the and Congress must significant and to that we have a and system of LTSS. Our is that we for a about the of LTSS system that we will all have to access to at some and how we can most cost The expressed in this are those of the and do not the or policy of the of or the United States