Long-term services and supports (LTSS) have long had a marginal place in American health and social policy. No clear consensus exists that provision of such services is principally a public responsibility. The interplay of chronic and acute health conditions has meant that there is no singular claim of professional responsibility for LTSS. The recipients of those services, long defined by their incapacities, have had little political or policy standing. And the grinding nature of long-term service delivery and receipt has been less politically attractive than the cash benefits of Social Security, the health care benefits of Medicare, or the community support services of the Older Americans Act. Much as a result, American LTSS policy has resided in the largely means-tested world of Medicaid.
Although these realities led to years of policy stasis and frustration, more recent developments have brought needed and meaningful change to this arena. Most notable has been the evolution of federal and state policy away from institutionally based care to services provided in home and community settings. Beyond home-based services being a preferred locus for service delivery, this evolution has spoken to the idea of “normalizing” or demedicalizing services wherever possible. The recognition of functional ability criteria beyond medical diagnoses gave further standing to the goal of enhancing client autonomy.
Finally, and at first seemingly remote, developments in policy design and implementation within the nation’s federal structure have contributed to experimentation and innovation in health and social policy delivery, including LTSS. Federally supported social services hardly existed prior to the New Frontier and Great Society programs of the Kennedy/Johnson years. Not only did those years see the enactment of literally scores of policies and hundreds of titles (what John Gardner once referred to as the “vending machine concept of social change: put in a problem and out comes a program”), but these were narrow, highly categorical programs. Washington called the shots, having policy provisions enforced by federal regional offices, sorted out by governors and budget officials at the state level, and sent down to cities and towns, with rule books tight in hand. In this world of what Harold Seidman termed “picket fence federalism,” accountability trumped flexibility.
Subsequent years have seen a loosening of these federal strictures. Categorical grants were largely replaced by block grants, ones which gave much more leeway to state and local officials. The short-lived revenue-sharing program gave these officials virtually complete control of federal dollars, eventually capped when federal officials finally realized it was too much of a good thing.
Returning the world of LTSS, these developments affected the federal state Medicaid program as well. Language essentially limiting long-term services to institutional facilities was gradually loosened, and regulatory tensions (and expenditures) emerged around defining and enforcing “medically required” care conditions. Further flexibility was reflected in the introduction of Section 1915(c) into Medicaid, allowing states to apply for waivers to introduce home and community-based services. Moreover, the “state-wideness” entitlement provision of 1960s-era federal grants was waived as well, allowing services innovation without breaking the bank. The Supreme Court’s 1999 Olmstead decision provided a Constitutional basis for community care, and in 2005, the Deficit Reduction Act allowed services expansion without the waiver requirement.
It is hard to overstate the implications of these federalism developments both within and beyond the world of LTSS. In short, federal services policy went from a clear “top-down” model to a “side-over” one, and now, as we are about to see, to a “bottom-up” one. This has represented a clear cultural transformation for those wedded to the earlier template of “design → specify → instruct → evaluate” models of public policy. Increasingly, choice, adaptability, variability, and autonomy have come to supplement, if not supplant as modal principles, control, accountability, and containment.
This context contributes to why self-direction is such an important social policy development. Self-direction in LTSS represents, if you will, “from the very bottom-up”: participants (no longer patients or clients) are, theoretically at least, in control. As the articles in this issue of Public Policy & Aging Report ( PP&AR ) will make clear, this is a truly transformative development. But it is also remarkable from a policy perspective: the informal realm (individuals, family, friends, and neighbors) has upstaged the formal (professionals, officials, and employees) and the private sector (commercial, for-profit, and entrepreneurial) has challenged the public (regulations, agencies, and inspectors).
There is, of course, more nuance than the above suggests, but the overall movement is not in question. Indeed, issues of accountability, management capacity, cost containment, safety, and fraud prevention continue to nip at the edges of the self-directed LTSS movement. And the articles below acknowledge those concerns. But, beginning with the Cash & Counseling (C&C) demonstrations and now continuing to where 270 self-directed LTSS programs enroll some 840,000 individuals, participant direction has clearly left the station and, according to recent research, is staying on track.
PP&AR is privileged to have attracted many of the principals who have promoted, designed, implemented, and assessed the LTSS self-direction movement. Kathryn Keitzman and Ted Benjamin set the stage for the issue, reviewing the emergence of self- or participant or consumer direction. They note, importantly, that the impetus came more from the “independent living movement” centered on younger adults, most often with physical disabilities. Their demand, as was soon to be the case with older adults, was for more nonmedical and supportive services. The authors then pay homage to the first and the largest Medicaid personal care services initiative, California’s In-Home Supportive Services program. They then note the critical place of the C&C demonstration, conducted in three states nearly 20 years ago. Cash and discretion led to a set of positive outcomes, and the demonstration was extended to 12 additional states. Keitzman and Benjamin go on to recount how new service populations were incorporated into the self-direction model. More recently, pressures on this approach (and on LTSS more generally) came with the Great Recession of 2007–2009. There are also challenges associated with some provisions of the Affordable Care Act, including capitated plans and coordination schemes that may impinge on the self-direction approach.
Frank Thompson, Pamela Nadash, Michael Gusmano, and Edward Alan Miller place the emergence of self-direction in a federal framework. They first speak to the major policy developments, briefly enumerated above. They then turn to the principal policy development that could impinge on self-direction’s structure and growth, namely Medicaid managed long-term services and supports. The principal service concern is the re-encroachment of the medical model into LTSS, whereas the organizational concern centers on the introduction of commercial managed care plans in many markets that may lack experience in addressing the concerns of frail individuals. The authors then review their in-depth study of three states’ experience with self-direction in LTSS: Wisconsin, Ohio, and New Jersey. Against various odds, advocates in the first two states repelled restrictive initiatives by public officials, whereas in New Jersey, public officials themselves sought to resist pressures from the governor and the nursing home industry.
Kevin Mahoney, Pamela Doty, Lori Rusinowitz, and Andy Burness are perhaps more than others associated with the rise and acceptance of self-directed LTSS. They have responded eloquently to our request that they take us through “the journey” that brought this intervention to the central place it occupies today. They begin with the seemingly unlikely account, whereby Arkansas Governor Mike Huckabee became a chief early proponent of the C&C model that later evolved into the broader self-directed initiative. They speak to the state-level politics where Democrats (favoring the “have-nots”) and Republicans (favoring market-based interventions) could coalesce around C&C. The authors and their funders worked closely with the Center for Medicare and Medicaid Services’ predecessor organization to gain legislative and regulatory acceptance for the model. Mahoney et al. detail strategies they used to popularize C&C, including brochures, announcements, media appearances, and early/brief research findings, supporting the model’s efficacy. They go on to address their critical involvement with Veterans Health Administration and model’s adoption by 53 Veterans Affairs Medical Centers. Finally, the authors take pride in findings that not only show broad-based satisfaction and positive outcomes generated by self-direction but also show as well that self-direction has independently contributed to the resource shift from institutional to community-based services.
The following two articles tackle some of the implementation challenges self-direction models face in the larger evolving LTSS environment. Mark Sciegaj, Suzanne Crisp, Merle Edwards-Orr, and Casey DeLuca identify three themes emerging from LTSS programs under managed care initiatives. The rationale behind further integration of acute and chronic care lies both in better care coordination, heightened service delivery effectiveness, and further LTSS rebalancing efforts. Sciegaj and colleagues undertook two studies: one investigating the 12 Medicaid managed care contracts that had a self-directed LTSS option and the other did in-depth research into five of those to see how self-direction was being implemented. The first theme found that most states defer the development and operation of the self-development element to the managed care entities themselves. They found contracts with only nominal language regarding self-direction and procedural manuals with vague contract language. Second, they found that most managed care programs lacked specific quality measures for self-directed service options. Third, and more positively, evidence suggested that self-direction did serve to improve participant well-being, care quality, and cost containment. They note in particular research showing that self-directed participants are less likely to fall, to have respiratory infections, or to spend a night in a hospital. Overall, the authors argue that self-direction can be compatible with managed care strictures and that it can lead to positive participant outcomes. But, it is important that plans do not view self-direction as “a niche or add-on” program and that it must be really understood as an essential component of Medicaid managed care.
Robert Applebaum and Kevin Mahoney wrestle with the quality assurance concerns that have been directed at the self-direction model over the years. When the C&C demonstration began nearly two decades ago, many providers and policymakers wondered how quality could be assured in the absence of professional supervision. Applebaum and Mahoney find ironic that the two long-term provider groups that do have well-established formal surveillance methods—nursing homes and home health agencies—have been consistently criticized for poor quality. Why, then, should self-direction be criticized for not having them? The authors go on to note that by now C&C and other programs have provided a powerful response to the concerns that self-directed participants would be more susceptible to health and safety problems. Inspection elements can serve as one element of a quality assurance approach, but there is an array of strategies, including self-direction, that can contribute to assuring quality service delivery.
Vidhya Alakeson presents an important cross-national assessment of self-directed LTSS options. She focuses on England, Netherlands, Australia, Germany, and the United States, finding both similarities and differences in their approaches. At the broadest level, Germany, Netherlands, and Australia have social insurance systems incorporating LTSS, whereas the United States and England use general-revenue funded, means-tested policies. Germany makes largely unrestricted cash payments or more restrictive personal service packages available, with the former option being less generous; most countries tilt in the more restrictive direction. Alakeson points to three major programmatic differences internationally: eligibility (considerable variation for those requiring mental health services), policy (England and Australia emphasizing service choice, and Germany and Netherlands more concerned with cost containment), and process (greater flexibility associated with so-called woodwork effect concerns, and potential legal issues complicating matters more than do information and referral ones).
Our concluding article is by James Knickman who, while at the Robert Wood Johnson Foundation, played a key role in the development and implementation of the C&C demonstration projects that generated the broader self-directed care movement. He first notes early interest in the concept both in Europe and then in the independent living movement. He observes as well that movement toward a public cash benefit directed either to participants or their family members was impeded by the ongoing debate whether LTSS is a family or public responsibility. Looking to the future, Knickman considers the effect value-based and capitated reimbursement systems will have on the self-directed care movement. If self-direction can be shown to be an effective preventive intervention lessening medical and nursing home costs, the future would appear to be bright. But introduction of such systems runs the risk that “smaller doses” of cash infusion for self-directed community-based care might also result. Overall, however, self- or participant-directed care has been a model of successful public policy development and implementation, a movement coming from the grass roots and developed through the combined efforts of federal and state governments, philanthropic organizations, professional and advocacy organizations, and committed social and health care researchers.
We are pleased to present this thorough and informed contemporary assessment of the self-direction movement in LTSS, an assessment provided by undisputed leaders in the field.