How The Affordable Care Act Can Help Move States Toward A High- Performing System Of Long-Term Services And Supports

Transcription

1 The Care Span By Susan C. Reinhard, Enid Kassner, and Ari Houser THE CARE SPAN How The Affordable Care Act Can Help Move States Toward A High- Performing System Of Long-Term Services And Supports doi: /hlthaff HEALTH AFFAIRS 30, NO. 3 (2011): Project HOPE The People-to-People Health Foundation, Inc. ABSTRACT The United States may advance toward a high-performing health care system that offers long-term services and supports for people with disabilities and chronic conditions, or it may retreat from gains achieved in recent years. Since the 1980s, policy makers and advocates for the disabled have sought to move from a system that emphasizes nursing homes and institutional care to one that includes a broader range of care options. The Affordable Care Act of 2010 gives this movement a considerable boost by offering states timely new options and enhanced federal funding to create a care system that meets the diverse needs and preferences of people with disabilities and that also recognizes the role of family caregivers. In this paper we outline the five key characteristics of a high-performing system of long-term services and supports. We describe an emerging scorecard that could help measure states progress toward this goal. And we itemize aspects of the Affordable Care Act intended to support the creation of such a high-performing system for the disabled and those with chronic conditions. Susan C. Reinhard (sreinhard@aarp.org) is senior vice president and director of the Public Policy Institute at AARP, in Washington, D.C. Enid Kassner is director of the Independent Living/Long- Term Care Team at the Public Policy Institute, AARP. Ari Houser is a senior policy research analyst on the Independent Living/Long-Term Care Team at the Public Policy Institute, AARP. Disability or the onset of a chronic condition can strike at any age. The resulting need for long-term services and supports often takes individuals and their families by surprise and finds them unprepared. Most people faced with a disabling condition want to stay in their own homes, but the required support services are often unavailable or financially out of reach. Across the United States, family members and other unpaid caregivers provide most of the services that help people with disabilities remain in their homes. These caregivers often place their own health and financial security at risk in the process. In general, public programs that provide assistance for the disabled are uncoordinated, confusing, 1 and underfunded; 2 require people to impoverish themselves to become eligible; and provide inadequate support to family members who assume the role of caregiver. The provision of long-term services and supports in the United States is largely regulated, controlled, and operated at the state level. Private insurers and Medicare pick up a minor portion of the costs. The primary payer for long-term services and supports is Medicaid, which allows substantial state-level variation in covered services under broad federal guidelines. As a result, there are significant differences among states with respect to the overall quality of services and supports, types and amounts of services offered, who is eligible for them, and how easy or difficult it is for those in need of assistance to navigate through the system. At the same time, the primary responsibility March :3 Health Affairs 447

2 TheCareSpan for improving the system falls to state-level policy makers, whose main vehicle for change is their state s Medicaid program. Over the next few years, the United States in effect will choose between creating a nationwide, high-performing system of long-term services and supports or abandoning that goal. Economic difficulties and increased need are stretching the current system to, if not past, its limits. The United States recently experienced the most severe economic downturn since the Great Depression. When family incomes shrank, demand for publicly funded services increased, as a recent survey of state officials by the AARP Public Policy Institute documents. 3 Yet thirtyone states cut their budgets for non-medicaid programs that provide long-term services and supports for the aging and the disabled in fiscal year 2010, and twenty-eight states were expected to cut those budgets in fiscal year The American Recovery and Reinvestment Act of 2009 countered this trend of reducing longterm services by providing stimulus funding to state Medicaid programs if states refrained from reducing Medicaid eligibility. But when the act s provisions expire at the end of June 2011, Medicaid s home and community-based service programs may be vulnerable to being cut. Despite threats to the continued existence of long-term services and supports, the AARP survey 3 revealed that more than thirty states made it a priority to maintain current long-term services, and twenty-four states planned to develop new home and community-based services as a way to deliver services more cost effectively during a period of constrained resources. Most of these states plan to move away from policies that encourage placing people who need long-term care in nursing homes, and toward programs that support people with disabilities or chronic conditions at home or with community-based services. These programs can be both cost-effective and more appealing to people with disabilities, most of whom wish to avoid institutionalization. On average, the Medicaid dollars that are required to support one adult in a nursing home are almost enough to support three adults with physical disabilities through home and community-based services. 4 Part of the impetus for states to take immediate steps toward an exemplary system of longterm services and supports comes from the Affordable Care Act of Embedded in this landmark legislation is a timely, robust array of new options and incentives some of them available for only a limited time that states can use to move forward. The Scorecard Project To help states assess their systems of long-term services and supports, AARP, the Commonwealth Fund, and the SCAN Foundation are sponsoring a project to define long-term services and supports and to articulate what a highperforming system of delivering them would look like. These two steps lay the foundation for the final component of the project: developing a performance scorecard for a state-level system of long-term services and supports. Once this tool is available, it will permit comparisons among states at a given point in time and will make it possible to measure progress in an individual state over time. The scorecard project team has developed definitions and a vision for long-term services and supports. It has identified the indicators that will be captured in the scorecard, as explained below. The team expects to release its final report and the scorecard in the summer of The team has had the help of a national advisory panel and a technical advisory panel. It has also conducted an extensive review of the literature and interviews with key stakeholders. The advisory panels represent a broad variety of stakeholders and experts in long-term services and supports. Panel members include researchers, consultants, representatives of public- and private-sector agencies including the Centers for Medicare and Medicaid Services (CMS), the Administration on Aging, and the Agency for Healthcare Research and Quality foundation leaders, and state officials. Although the scorecard is still under development, the vision of a high-performing system of long-term services and supports that the scorecard will reflect may be used by states now to start identifying their goals and the Affordable Care Act provisions that may be invoked to accomplish them. Long-Term Services And Supports Need For A Definition Many readers may be more familiar with the term long-term care than they are with long-term services and supports. However, the latter term is replacing the former, in part because long-term care is often incorrectly equated with nursing home care. The phrase long-term services and supports captures a broad spectrum of options for people who because of ongoing disabilities and chronic conditions require long-term assistance, delivered in settings that range from private residences to assisted living facilities and nursing homes. There is no clear consensus in the policy and research literature about how to define long-term services and supports. Some elements are implicit. 448 Health Affairs March :3

3 For example, these services and supports are intended to meet the needs of people requiring assistance with the so-called activities of daily living, such as bathing and dressing, and possibly with what are called the instrumental activities of daily living, such as shopping and housework. 5 Other elements are not necessarily included, such as postacute stays stays of up to ninety days in a nursing home for rehabilitation after hospitalization. 6 State systems of long-term services and supports serve multiple populations: people of all ages with physical disabilities, intellectual or developmental disabilities, or serious mental disorders. For this project, the scorecard team focused on systems that serve older adults 7 and people with physical disabilities. The scorecard team wanted a definition that would provide a foundation for both a vision of a high-performing system of long-term services and supports and specific, strategic actions to achieve such a system. The goal was a definition focused enough to drive change yet broad enough to capture the system as seen from three major perspectives: the people who need the systems; the services delivered; and the providers who offer them. In short, the definition should provide a basis for envisioning and then realizing the kind of long-term services and supports system that people really want. The highlights of the scorecard team s definition of long-term services and supports appear below. Although the team s definition is limited to the adult population, in keeping with the scorecard s objectives and focus, it should be noted that definitions of long-term services and supports, writ large, generally include assistance provided to people of all ages (such as disabled children). More details of the team s definition are available in the Appendix. 8 The Scorecard Team s Definition Long-term services and supports are defined as assistance with activities of daily living and instrumental activities of daily living provided to older people and other adults with disabilities. These people cannot perform these activities on their own because of a physical, cognitive, or chronic health condition that is expected to continue for an extended period of time, typically ninety days or more. Long-term services and supports include direct human assistance, supervision, cueing 9 and standby assistance; assistive technologies or devices and environmental modifications; health maintenance tasks, such as medication management and ostomy care; information; and care and service coordination for people who live in their own homes, residential settings, or nursing facilities. Long-term services and supports also include supports provided to family members and other unpaid caregivers. People with long-term services and supports needs may also have chronic conditions that require health or medical services. In a highperforming system, long-term services and supports are coordinated with housing, transportation, and health or medical services, especially during periods of transition among acute, postacute, and other settings. A High-Performing System Many people who require long-term services and supports do not currently have access to what they need. Although some state systems focus on the needs and preferences of the individual, many others use outmoded models. For instance, many state Medicaid programs rely too heavily on nursing homes and fail to offer a broad array of affordable options. Quality of care and quality of life for people in the long-term services and supports system may differ greatly across states. The scorecard team believes that the ultimate goal of a long-term services and supports system should be to improve the well-being and quality of life of people (and their families) who have functional limitations that are due to chronic conditions, illness, injury, or other causes of disability. A high-performing system is characterized by five key elements: support for family caregivers; ease of access and affordability; choice of settings and providers; quality of care and life; and effective transitions and organization of care. The extent to which these key characteristics may be present in any state system of long-term services and supports is not directly measurable. However, it can be determined by examining indicators that flow from those characteristics and are measurable. These indicators can be used to assess differences between systems at a given point in time and to assess progress within an individual system over time. Brief explanations of the five key characteristics are provided below. Additional details are available in the Appendix. 8 Support For Family Caregivers Family members and other unpaid caregivers are a fundamental component of any high-performing system of long-term services and supports. This is true even for people who also receive supports and services from paid providers in their homes or other settings. In 2005, 88 percent of older people living in the community who received help with two or more personal assistance tasks (defined here as activities of daily living) relied on unpaid caregivers for help, and only 29 per- March :3 Health Affairs 449

4 TheCareSpan cent received assistance from paid providers. 10,11 Although most family caregivers fulfill their responsibilities out of love, loyalty, or a sense of duty, the accumulated strain over time can be overwhelming. Thus, it is critical that a high-performing system recognize and support unpaid caregivers, to help them maintain their own well-being as well as providing care. For example, a system can tailor supports to the individual caregiver s situation, including work and family responsibilities, and involve family members whenever appropriate in making decisions about and planning for care. Ease Of Access And Affordability When the need for long-term services and supports arises, the person who needs the care and his or her family may find themselves confronted by a complex and confusing set of decisions to make, with little help or information available to them. They may be shocked by the high costs of the services and supports and concerned about their ability to pay for them. The bulk of publicly financed long-term services and supports is provided under state programs (primarily Medicaid), with great variation among states in what services are available and who qualifies to receive them. The need for quick action in response to an accident or health crisis, such as a stroke, can intensify the already difficult process of gathering information and making decisions. A high-performing system ensures that statespecific information required to make decisions is readily available, timely, and clear; that services are affordable for those with moderate and higher incomes; that a safety net is available for those who cannot afford to pay for all of the services they may need; and that those who need help and their families can easily and quickly determine eligibility for public programs. Choice Of Settings And Providers The needs of each person requiring long-term services and supports are unique, and people s provider and residential preferences vary considerably. Nearly all states have an abundant supply of nursing facilities. However, many states have a shortage of home and community-based alternatives, such as assisted living and small group homes, or do not provide public financing for care in those settings. Sometimes placement in a nursing home, although not the individual s preference, may be the only way to obtain needed assistance. High-performing systems should take a person-centered approach, which allows people in need of long-term services and supports to receive them in the setting, and from the providers, they choose including family members hired as caregivers. Such systems should also offer a range of housing and transportation choices to support people s ability to maintain vital connections to their communities. And the systems should involve beneficiaries, whenever possible, in making decisions about the arrangements for their own care. Quality Of Care And Life The quality of a long-term services and supports system depends equally on the quality of the care it delivers and on the quality of life that its beneficiaries experience. Therefore, the system must attend to people s social and emotional needs, not just their needs for help with medical tasks or activities of daily living. In all instances, the delivery of services and supports should be free from abuse, neglect, and unsafe or unhealthy practices. A high-performing system, therefore, ensures that long-term services and supports are safe and effective; that the people who deliver the services and supports respect beneficiaries personal dignity and preferences, such as food preferences and the desire to surround themselves with personal belongings; that the workforce of paid caregivers is large enough and adequately trained; that caregivers engage beneficiaries with their communities and maintain or increase beneficiaries quality of life to the greatest extent possible; and that regulatory standards require high quality of care and are adequately enforced. Transitions And Organization Of Care To accomplish effective coordination in a complex and often fragmented network of service providers and settings, providers must communicate with each other. The provision of health services must be coordinated with attention to making sure the patient has needed medication and can follow prescribed medication regimens; to meeting the patient s social and behavioral needs; and to meeting the needs of family caregivers, such as how to access and arrange for services, referral to caregiver education and training, and the availability of respite services. High-performing systems must integrate longterm services and supports with health-related services such as clinician services and physical therapy, as well as with social supports such as transportation. In addition, the systems should avoid unnecessary transitions between settings for example, from a nursing home to a hospital and ensure the smooth coordination of necessary transitions, such as from a hospital to home. The Affordable Care Act s Role In these challenging economic times, it is particularly helpful that Congress, when crafting the Affordable Care Act, chose to offer states carrots to support improvements in their longterm services and supports systems rather than 450 Health Affairs March :3

5 sticks to punish them for underperformance. The following examples show how state policy makers can use provisions of the act to achieve the goals of a high-performing system; they indicate states interest in those provisions according to AARP s recent survey. 3 Balance Types Of Services It is clear that consumers prefer to receive long-term services and supports at home or in community-based settings. Nonetheless, most states continue to devote the majority of their Medicaid long-term services and supports spending to pay for nursing home care. The Affordable Care Act includes new financial incentives for states to reverse this trend, thereby achieving the long-standing goal of a more balanced system of care. The Community First Choice option increases the federal share of Medicaid costs by six percentage points for states that offer personcentered home and community-based services, such as help with daily activities and healthrelated tasks. Nineteen states expressed preliminary interest in this provision, although many states were waiting for more information about program rules at the time of the survey. 3 Another option for states is the Balancing Incentives Payment Program, which directs the greatest financial incentives to states that currently have the least-balanced systems in other words, states that rely the most on nursing homes. In return for increased federal Medicaid payments, participating states must agree to implement several hallmarks of a high-performing system. These include a statewide single point of entry into the service system (see below), conflict-free case management systems, and a standardized assessment instrument that is used consistently throughout the state for determining clients eligibility for all types of care. For a system to be conflict-free, care managers must act without self-interest and must receive no financial reward from the providers of services they recommend. Fourteen states expressed interest in this program, although that number may change as more regulatory guidance is issued. 3 States also may apply for Money Follows the Person grants that help move people out of institutions or avoid unwanted institutionalization. Congress allocated $2.25 billion through 2016 for this program, bringing its total funding to $4 billion. According to the AARP survey, twenty-seven states intend to apply for additional Money Follows the Person funds, and twelve other states expressed an intention to seek the funds for the first time. 3 Establish A Single Point Of Entry A number of states have led the way to what is sometimes called a no wrong door system of service delivery by making it easier for beneficiaries and their families to navigate the system, gaining access to the full range of long-term services and supports. Under the no wrong door policy, any relevant state agency that is contacted by someone in need of long-term services and supports should be able to provide the necessary information about how to apply for services and be assessed for eligibility. Once a beneficiary is in the system, a single point of contact should be able to provide access to the full array of services for which that person is eligible. For fiscal years , the Affordable Care Act is providing $10 million per year in grants to states to improve and expand their Aging and Disability Resource Centers. 12 These one-stop locations are designed to provide comprehensive information and assistance to people of all income levels and all types of disability. Although most states operate some of these centers, the expanded funding will help states open more centers, thereby greatly expanding timely access to the most appropriate services and supports. Improve Coordination And Transitions A body of research has identified programs and models of chronic care service delivery that coordinate services and improve transitions between care settings and, in the process, reduce hospitalizations, reduce costs, and improve patients outcomes. 13 The nine million people who are eligible for both Medicare and Medicaid, called dual eligibles, are among the highestcost and most vulnerable individuals in the health care system and are among the most likely to benefit from progress in these areas. The Affordable Care Act provides several opportunities to improve transitions between settings and coordination of services within states systems of long-term services and supports. In 2011 states will have a new Medicaid option to establish health homes for beneficiaries with chronic conditions and to receive enhanced federal matching payments during the first two years of the homes operation. The act also establishes the Federal Coordinated Health Care Office, which is charged with improving the integration of benefits and increasing coordination between federal and state governments. This office recently launched state demonstration projects to identify and evaluate delivery system and payment models for dual eligibles that can be rapidly tested and, if successful, replicated in other states. As part of this initiative, the office plans to award contracts to up to fifteen states of up to $1 million each for program design. In the AARP survey, more than half of the states expressed interest in applying for one or more of the new programs authorized by the Affordable Care Act to improve coordination. 3 March :3 Health Affairs 451

6 TheCareSpan Conclusion It has been thirty years since the first Medicaid home and community-based waiver programs were authorized. When Medicaid was enacted in 1965, the only mandatory coverage of longterm services and supports was that provided in skilled nursing facilities. States had limited options for providing medical and personal care services in beneficiaries homes. But in 1981 Congress allowed states to waive certain federal requirements in order to increase their ability to provide home and community-based services to people who would otherwise have to be in a nursing home. The movement to replace states exclusive reliance on institutions to provide long-term services and supports with the use of various options that meet the diverse preferences of people with disabilities began slowly, but it has picked up speed in recent years. For example, the percentage of Medicaid spending on long-term services and supports for older people and adults with physical disabilities that paid for home and community-based services grew from about 14 percent in to 19 percent in 1999, 15 but it was 33 percent in State and federal policy makers, advocates for people with disabilities, and researchers have devoted considerable energy to achieving these gains. Yet some states may use the current fiscal crisis as an excuse to stop making progress. Instead, we believe that states should see the crisis as an opportunity to make their systems of longterm services and supports more cost-effective and responsive to the needs of the people who use them. The Affordable Care Act gives states an opportunity to build on their momentum. The scorecard identifies ease of access as a critical element of a high-performing system of long-term services and supports. Under the act, states can apply for federal funds to expand their Aging and Disability Resource Centers to make them effective single points of entry to their systems. Another indicator of high performance is choice of settings. States that participate in the Community First Choice and Money Follows the Person programs will increase beneficiaries options by leveling the playing field between institutional and home-based services. The Balancing Incentives Payment Program targets the states that are most in need of directing resources toward home and community-based services. Simultaneously, it requires that the states improve performance by establishing single points of entry and adopting other best practices. At stake is the ability of people with disabilities and chronic conditions to exercise control over their lives, to improve their quality of life through maximum independence, and to flourish in their communities with dignity. These goals are ambitious, but they are achievable if states make the commitment to reach them. The AARP Public Policy Institute is grateful for the support of the AARP Foundation and its funders, The Commonwealth Fund and The SCAN Foundation. The authors acknowledge the contributions of Harriet Komisar and Robert M. Mollica, who provided considerable background information that led to the development of this article. NOTES 1 O Shaughnessy CV. Aging and Disability Resource Centers (ADRCs): federal and state efforts to guide consumers through the long-term services and supports maze [Internet]. Washington (DC): National Health Policy Forum; 2010 Nov 19 [cited 2011 Jan 25]. (Background Paper No. 81). Available from: background-papers/ BP81_ADRCs_ pdf 2 Rose M, Ejaz FK, Noelker LS, Castora-Binkley M. Recent findings on home and community-based services across the states. Public Policy and Aging Report. 2010;20(1): Walls J, Gifford K, Rudd C, O Rourke R, Roherty M, Copeland L, et al. Weathering the storm: the impact of the great recession on long-term services and supports [Internet]. Washington (DC): AARP Public Policy Institute; 2011 Jan [cited 2011 Feb 17]. (Research Report). Available from: rgcenter/ppi/ltc/2011-weatheringstorm.pdf 4 Kassner E, Reinhard S, Fox-Grage W, Houser A, Accius J, Coleman B, et al. A balancing act: state long-term care reform [Internet].Washington (DC): AARP Public Policy Institute; 2008 Jul [cited 2011 Jan 25]. (Research Report). Available from: assets.aarp.org/rgcenter/il/ 2008_10_ltc.pdf 5 Wiener JM (RTI International; Washington, DC). Long-term care: options in an era of health reform, expanded edition [Internet]. Washington (DC): Alliance for Health Reform and The SCAN Foundation; 2009 Apr [cited 2011 Feb 17]. Available from: foundation.org/sites/default/files/ AllianceLTCPaper.pdf 6 Kane RA, Kane RL, Ladd RC. The heart of long-term care. New York (NY): Oxford University Press; Some federal programs, such as the Older Americans Act, define older adult as someone age sixty or older. Other programs, such as Medicaid, define the term as someone age sixty-five or older. The scorecard does not use a particular age. 8 To access the Appendix, click on the Appendix link in the box to the right of the article online. 9 The term cueing means verbally or visually prompting or coaching an individual to perform a function, as opposed to providing hands-on assistance. 10 Appendix to: Kaye HS, Harrington C, LaPlante MP. Long-term care: who gets it, who provides it, who pays, and how much? Health Aff (Millwood). 2010;29(1): Among younger people and those with lower levels of disability, the 452 Health Affairs March :3

7 proportion receiving paid help was much smaller. For example, fewer than 8 percent of people ages who needed help with any activity of daily living or instrumental activity of daily living received paid help. 12 Administration on Aging. Aging and disability resource centers [Internet]. Washington (DC): AoA; [cited 2011 Jan 26]. Available from: Programs/HCLTC/ADRC/ index.aspx 13 Boult C, Green AF, Boult LB, Pacala JT, Snyder C, Leff B. Successful models of comprehensive care for older adults with chronic conditions: evidence for the Institute of Medicine s Retooling for an Aging America report. J Am Geriatr Soc. 2009;57(12): Authors analysis of Medicaid spending data from Burwell B. Medicaid long-term care expenditures in fiscal year Gerontologist. 2001;41(5): Authors analysis of Medicaid spending data from Table 1 in: Burwell B, Sredl K, Eiken S. Medicaid long-term care expenditures in FY 2005 [Internet]. Cambridge (MA): Thomson Medstat; 2006 Jul 5 [cited 2011 Feb 17]. Available from: LTCExpenditure.pdf 16 Authors analysis of Medicaid spending data from Table 1 in: Eiken S, Sredl K, Burwell B, Gold L. Medicaid long-term care expenditures in FY 2009 [Internet]. Cambridge (MA): Thomson Reuters; 2010 Aug 17 [cited 2011 Feb 17]. Available from: files/194/9675/2009_ltc_ ExpendituresTables.pdf ABOUT THE AUTHORS: SUSAN C. REINHARD, ENID KASSNER & ARI HOUSER Susan C. Reinhard is senior vice president and director of the AARP Public Policy Institute. Susan Reinhard and colleagues describe how states will be able to use a new scorecard to identify important opportunities for advancing long-term services and supports under the Affordable Care Act. The article builds on a 2008 report from AARP s PublicPolicy Institute, which noted that the pace at which states were moving from institutional to home and community-based long-term services and supports was faster for younger, developmentally disabled individuals than for older individuals. AARP, The Commonwealth Fund, and The SCAN Foundation agreed that developing a scorecard that assessed each state s long-term services and supports could help identify strengths and weaknesses and could accelerate change in programs assisting older people. Reinhard was appointed head of the effort to create a scorecard. She expects the scorecard to be ready for release in summer Reinhard is a senior vice president at AARP and director of its Public Policy Institute. From 2000 to 2007 she was a professor and the codirector of the Rutgers Center for State Health Policy, where she provided technical assistance to states interested in helping people of all ages with disabilities live in their homes and communities. She served under three different New Jersey governorsasdeputycommissioner of the state s Department of Health and Senior Services. A former faculty member at the Rutgers College of Nursing, Reinhard holds amaster s degreeinnursingfrom the University of Cincinnati and a doctorate in sociology from Rutgers. Enid Kassner is director of the Independent Living/ Long-Term Care Team at the AARP Public Policy Institute. Enid Kassner is director of the AARP Public Policy Institute s Independent Living/Long-Term Care Team. In that capacity, she oversees research and policy development focused on expanding consumer access to an array of affordable long-term care options, with an emphasis on improving community-based living and service delivery and supporting family caregivers. Kassner has more than twenty-five years experience in the field of aging as a policy analyst, researcher, author, lobbyist, and speaker. She holds a master s degree in social work from the University of Maryland. Ari Houser is a senior policy research analyst on the Independent Living/Long-Term Care Team at the AARP Public Policy Institute. Ari Houser is a senior policy researchanalystattheaarppublic Policy Institute, where he is part of the Independent Living/Long-Term Care Team. He specializes in quantitative analysis and modeling, and he conducts research focused on trends in demographics, disability, family caregiving, and use of paid long-term services and supports. Houser received a master s degree in measurement, statistics, and evaluation from the University of Maryland. March :3 Health Affairs 453