7
Research on the Organization, Financing, and Delivery of Health Services

This chapter focuses on the current status and need for health services research (HSR) as it pertains to the delivery of health services and health-related support services for people with disabling conditions. As investigators continue to develop a better understanding of the pathology of physical impairments and how specific therapeutic interventions and advances in engineering assist in restoring and enhancing function, they must also learn how best to organize, deliver, and finance these interventions so that they can be readily accessed and effectively used by those who need them. This must be done, however, in an environment that continually challenges providers and insurers to contain costs and promote efficient use of limited resources.

The multidisciplinary field of health services research has been successful in developing approaches for studying the roles of organization, finance, personnel, technology, and prevention in the provision of health services and their impact on utilization, cost, and quality of care (Steinwachs, 1991). These methods have been applied across a broad range of populations and specific health conditions. There are limited examples, however, in which these methods have been specifically applied to evaluating the organization, financing, and delivery of services to people with disabling conditions. To the extent that HSR has included disability and rehabilitation in its agenda, it has focused primarily on issues regarding the care of children and the elderly; few studies have focused on the special needs of working-age adults with physical limitations (DeJong et al., 1989). Yet the number



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--> 7 Research on the Organization, Financing, and Delivery of Health Services This chapter focuses on the current status and need for health services research (HSR) as it pertains to the delivery of health services and health-related support services for people with disabling conditions. As investigators continue to develop a better understanding of the pathology of physical impairments and how specific therapeutic interventions and advances in engineering assist in restoring and enhancing function, they must also learn how best to organize, deliver, and finance these interventions so that they can be readily accessed and effectively used by those who need them. This must be done, however, in an environment that continually challenges providers and insurers to contain costs and promote efficient use of limited resources. The multidisciplinary field of health services research has been successful in developing approaches for studying the roles of organization, finance, personnel, technology, and prevention in the provision of health services and their impact on utilization, cost, and quality of care (Steinwachs, 1991). These methods have been applied across a broad range of populations and specific health conditions. There are limited examples, however, in which these methods have been specifically applied to evaluating the organization, financing, and delivery of services to people with disabling conditions. To the extent that HSR has included disability and rehabilitation in its agenda, it has focused primarily on issues regarding the care of children and the elderly; few studies have focused on the special needs of working-age adults with physical limitations (DeJong et al., 1989). Yet the number

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--> of working-age adults is growing faster than any other segment of the population with disabling conditions. In general, there has been little interaction between the fields of HSR and rehabilitation science and engineering. In a review of articles published in 1986 in the Archives of Physical Medicine and Rehabilitation, Fuhrer (1988) found that only 6 percent were in the area of HSR. In 1995 this had increased to 22 percent—although nearly one half of these articles described the development or evaluation of functional outcome and disability measures without reference to the evaluation of services. Similarly, very few reports (less than 5 percent) in the major journals in HSR (e.g., Medical Care and Health Services Research) focus on issues of rehabilitation services delivery and outcomes. Health Services Research Agenda Influencing Trends The development of a more comprehensive HSR agenda in rehabilitation science and engineering will be heavily influenced by three important trends in the epidemiology of disability and in the way that health services are organized and delivered (Batavia and DeJong, 1990). First, as significant strides in the clinical management of disabling conditions continue to be made, there will be increasing numbers of people with disabling conditions who are living longer and more active lives. This trend underscores the need for research that incorporates a life-long perspective and that focuses attention on the special needs of people who are aging with a disabling condition. Of critical importance is the development and evaluation of health delivery models that integrate a health promotion strategy that facilitates greater individual control over the determinants of health (Wallerstein, 1992). Equally important, however, is the recognition that disabling conditions are not deficits, but rather conditions of life. The management of a medically stable disabling condition is a personal matter first and a medical matter second (DeJong, 1979). It will be important to evaluate the success of alternative health care delivery models in terms of these parameters. Second, due in large part to the independent living movement, the expectations of people with disabling conditions have changed drastically and will continue to change in important ways. People with disabling conditions have determined that they are no longer willing to accept life-long dependent relationships, and they want to promote a view of disability as a socially constructed phenomenon. Independent living recognizes that people with disabling conditions are consumers of services rather than patients or clients. At the same time that the indepen-

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--> dent living movement is gaining momentum and increased acceptance and visibility, the U.S. society is witnessing a revolution in health care, that in general, places more emphasis on consumer preferences and expectations (Relman, 1988). Never before has the consumer's point of view of how well he or she is doing been so important. Their views and preferences are being used by clinicians in making treatment choices, by third-party payers in deciding what to pay for and what not to pay for, and by administrators and policy makers who are making difficult decisions regarding the allocation of expensive resources at the level of the individual practice as well as across society as a whole (Ellwood, 1988; Epstein, 1990). These similar perspectives on the important role of the consumer provide a unique opportunity for the fields of rehabilitation science and engineering and HSR to work together closely in the development and evaluation of health care delivery models that incorporate a consumer orientation toward the identification of needs and appropriate strategies for meeting those needs. A third and important trend that will influence the agenda of HSR in rehabilitation science and engineering is the continued interest in health care reform with an emphasis on cost-containment and value. New and innovative approaches to the organization, financing, and delivery of health services are being proposed. It is imperative that the rehabilitation field take aggressive and proactive steps toward evaluating the potential impacts of these changes on access, quality, and outcomes of services for people with disabling conditions. Priorities The following pages summarize the major HSR issues that need to be addressed over the next decade. These issues have been identified through a review of several major publications that have documented the need for and current deficiencies in the current HSR agenda as it pertains to people with disabling conditions. This review is followed by a discussion of alternative strategies for improving the interface between the fields of HSR and rehabilitation science and engineering. Before proceeding, however, it is important to point out two caveats to the discussion. First, the committee chose to focus on the current status and needs for HSR as it pertains to the delivery of health services and health-related support services only. These services have been defined as encompassing (1) medical rehabilitation services required for improving and maintaining function, (2) primary health care services for health maintenance and the prevention of secondary conditions, (3) long-term institutional care for those unable to live in the community, and (4) support services including personal assistance services and assistive technologies

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--> to assist people with disabling conditions (Batavia and DeJong, 1990). In limiting the discussion to these services only, the discussion will not directly address the organization, financing, and delivery of social and vocational services that, although important to the enabling process, are not traditionally thought of as part of the health care system. However, it is important to underscore the need to develop and evaluate better mechanisms of integrating the delivery of health and social-vocational services; the existing fragmentation of these services is of major concern. Second, this chapter primarily focuses on the organization, financing, and delivery of post-acute care services. The committee recognizes the important role that access to quality care in the acute clinical care setting plays in minimizing the life-long consequences of disabling injuries and illness. It also recognizes that although a growing literature exists on the clinical effectiveness of acute care interventions, much of this literature falls short in identifying the impact of alternative treatment strategies on long-term functional outcomes and quality of life. The needs for research in this area, although not detailed in this chapter, are critical to an overall strategy of improving and enhancing life following major illness or injury. Several landmark publications have discussed HSR priorities in rehabilitation and engineering (DeJong et al., 1989; Batavia et al., 1991; U.S. Department of Health and Human Services, 1995) The agenda for research encompasses a broad range of substantive and methodological issues; the committee chose to focus on three areas in which more research is particularly important if society is to better ensure that people with disabling conditions have access to the best possible care at costs that are affordable to the individual consumer and to society as a whole. They are as follows: Demonstrating the cost-effectiveness of clinical interventions and alternative service delivery models. This research must incorporate a broad range of outcomes, including impairment, functional status, and quality of life, as measures of effectiveness. Evaluating how primary health care and long-term support services are accessed, organized, and delivered for people with disabling conditions. The impacts of these services on the prevention of secondary conditions and promotion of well-being over the lifecourse should be given the highest priority. Evaluating the impact of managed care delivery systems on access to and use of services, quality of care, costs, and outcomes. This work should extend beyond the evaluation of Medicaid and Medicare programs to include assessments of innovative programs targeted at working adults with disabling conditions.

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--> Cost-Effectiveness Research Perhaps most important to the HSR agenda in rehabilitation science and engineering is an urgent need for a comprehensive program in clinical effectiveness and outcomes research. Outcomes research is not new to the field of rehabilitation. Yet, the breadth and rigor of the research are not sufficient for serving as a basis for shaping policy, defining treatment services guidelines, developing quality of care criteria, or developing innovative delivery models with greater integration of services. It is already known that people with disabling conditions use a disproportionate share of health care resources compared to those without disabling conditions. Trupin and colleagues estimate that approximately 17 percent of the population with an activity limitation account for 47 percent of total medical care expenditures (Trupin and Rice, 1996). These individuals incur medical care costs four times as great as people without disabling conditions. Overall, people with disabling conditions account for an estimated $282 billion (in 1993 dollars) in health care expenditures, or 3.1 percent of the gross domestic product (GDP). These figures are only likely to increase given the growing number of people with chronic diseases and disabling conditions, improved availability and access to services, and the proliferation of high-cost technologies. The investment in these expenditures is expected to be outweighed by the economic, social, and personal benefits accrued from getting people back to work or school and living independently. Unfortunately, very few studies have adequately examined the extent to which rehabilitation achieves these goals—and the relationship of achieving these goals to costs. In today's climate of rising health care expenditures and emphasis on cost-containment, it is incumbent upon the rehabilitation community to demonstrate what works best and at what cost. If something costs less, rehabilitation professionals need to make sure it is of comparable value, and if more is to be spent, there should be measurable benefits. Rehabilitation services and outcomes studies should not only focus on the cost-effectiveness of specific treatments and therapies, as discussed in Chapter 4, but should also address the costs and benefits of innovative models and systems for delivering care. HSR has long recognized that the area of clinical effectiveness and outcomes research is central to its agenda. In the past several years, however, outcomes research has received increased attention from the public and private sectors because of its potential for providing scientific information on which to base decisions (embodied in practice guidelines, insurance coverage, and payment policies) regarding the delivery of cost-effective and efficient health care. Through its multidisciplinary approach to the study of the organization, financing, and delivery of care, HSR has

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--> developed new (and has refined existing) paradigms and methodological approaches for examining the relationship between quality of care, costs, and health outcomes (Foundation for Health Services Research, 1991; Grady, 1992; Maklan, Greene, and Cummings, 1994). These approaches to outcomes research have been successfully used in evaluating the cost-effectiveness of specific surgical procedures and alternative approaches to managing acute medical conditions. The results are being effectively communicated among providers and policy makers and are significantly influencing the practice of medical care. There are very few examples, however, in which HSR methods have been applied to evaluating the effectiveness of rehabilitation services. Yet it is known that substantial variations in practice patterns exist. Variations in the clinical management of disabling conditions and the implications of these variations on outcome were discussed in Chapter 4. In addition to examining the relative effectiveness of specific clinical interventions, attention must also be focused on how services are organized and delivered across different settings and by different types of providers. Rehabilitation services remain one of the fastest-growing sectors of the health care industry. The characteristics of its growth, however, have changed dramatically over the past several years due to an increased emphasis on managed care as well as changing expectations of providers and consumers. In the 10 years between 1985 and 1994, the number of freestanding rehabilitation hospitals increased from 68 to 187 hospitals (175 percent), and the number of rehabilitation units in acute care hospitals increased from 386 to 804 (118 percent) (DeJong and Sutton, 1994; Wolk and Blair, 1994). With the more recent and growing emphasis on managed care and cost-containment, however, increased emphasis is being placed on lower-cost alternatives to traditional (specialized) inpatient rehabilitation (DeJong et al., 1996). In a study of three advanced managed care markets (San Diego, California; Minneapolis-St. Paul, Minnesota; and Worcester, Massachusetts) DeJong et al. (1996) reported a decline in occupancy rates in rehabilitation hospitals of up to 40 percent; the average length of stay declined from 30 to 35 days to 20 days. Inpatient rehabilitation is now often reserved for individuals with only a handful of conditions. An increasing number of individuals who were traditionally discharged to inpatient rehabilitation are now being referred for subacute care. Subacute care generally refers to a broad range of medical and rehabilitation services and settings that provide care to post-acute patients (Lewin-VHI, 1995). These services are being offered in a variety of settings, including (1) traditional inpatient rehabilitation providers who have diversified and are offering subacute care alternatives, (2) skilled nursing

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--> facilities that have added a rehabilitation component, and (3) a growing number of national for-profit chains of providers specifically focused on the delivery of subacute care. Since subacute care day rates are generally half those of inpatient rehabilitation ($500 versus $1,000), substantial cost savings are potentially realized by substituting subacute care for conventional inpatient rehabilitation. These cost savings are generally realized by providing less intensive services (Keith et al., 1995). Very little is known, however, about the comparative merits of these alternative approaches to rehabilitation. It will be important to look at the quality of rehabilitation services provided by subacute care facilities and to compare outcomes for patients treated in subacute care versus conventional inpatient rehabilitation settings. Critical to such a comparison will be adequate control for differences in the casemix of patients treated in alternative settings. In addition, given the diversity in quantity and type of services provided by both subacute care as well as rehabilitation units, it will be important to characterize the mix of services provided within any given setting and to correlate the mix of services with patient outcomes. As mentioned above, outcomes research is by no means new to the field of rehabilitation. Indeed, some of the earliest contributions to the literature on functional outcomes assessment were made by rehabilitation specialists (Mahoney and Barthel, 1965; Granger et al., 1979). The Functional Independence Measure (FIM) evolved from this early work and is now widely recognized and used as a standard measure of outcomes in medical rehabilitation (Keith et al., 1987). Although further testing of FIM is warranted, it holds promise as an effective tool for routine outcomes assessment for inpatient medical rehabilitation. As discussed in more detail below, however, FIM does not encompass broader issues of outcome such as role activity, psychological well-being, and general health perceptions. It has also been criticized for its lack of sensitivity to the range of disabling conditions associated with traumatic brain injury and other conditions associated with cognitive impairment. Despite these major advances in outcomes measurement, most experts in the field would agree that a large share of the rehabilitation services delivery and outcomes research being conducted today is deficient in both scope and scientific rigor. Major deficiencies are summarized below. Measuring Outcome When evaluating the effectiveness of comprehensive rehabilitation services and programs of care, it is important to move beyond the use of narrowly defined measures of morbidity, impairment, and ADL and IADL performance to include more global measures of health status and health-related quality of life (HRQL) (Fawcett et al.,

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--> 1993; Ware, 1995). Examples of these types of measures include the Sickness Impact Profile, the Short Form of the Health Status Questionnaire (SF-36), the Child Health Questionnaire, the Functional Status Questionnaire, the Quality of Life Survey and the Quality of Well-Being Scale (Bergner et al., 1985; Jette et al., 1986; Kaplan et al., 1989; Ware and Sherbourne, 1992; Landgraf et al., 1996). Although these measures vary in form and content, they all share two important characteristics in common which distinguish them from measures like FIM. First, they measure function across several domains, including not only physical health, cognitive and mental health, and social function, but also role function and general health perceptions. Perhaps most important, health status and HRQL measures assess outcomes from the consumer's point of view through the use of consumer questionnaires. It is important to emphasize that HRQL measures should not replace the more traditional measures of impairment, functional capacity, and performance. Rather, they should complement these measures in an attempt to better elucidate the relationships between impairment, functional limitation, disability, and quality of life. An important challenge in outcomes research is choosing an appropriate measure that is meaningful in a clinical or policy context but that is also sensitive enough to detect important differences or changes in outcome. It is also important to note that these broader measures of outcome and effectiveness greatly expand the power of evaluation research. With these broader measures that are applicable across types of disabilities and programs, it becomes possible to compare evaluation results across types of programs. This is critically needed for addressing resource allocation questions in a time of constrained funding for services (Patrick and Erickson, 1993). Lack of Comparison Groups A common methodologic deficiency in rehabilitation services and outcomes research is the infrequent use of comparison groups; the use of randomized controlled trials (RCT) is almost nonexistent. In many instances, one can appropriately argue that a RCT is not feasible, too costly, or unethical. However, well-conceived and executed nonrandomized, or quasiexperimental studies that incorporate appropriate, although not randomized, comparisons can provide critically important and often compelling inference. Increasingly, nonexperimental data are being used to guide program and policy decisions. HSR has played an important role in improving the collection, interpretation, and communication of nonexperimental data (Fowler, 1989; Sechrest et al., 1990). These methods, although challenging, must be more widely applied to the evaluation of rehabilitation services and programs.

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--> Need for Conceptual Framework and Longitudinal Designs In addition to incorporating appropriate comparison groups, priority should be given to longitudinal studies of outcome. Both the disabling and enabling processes are complex and longitudinal. To better understand the course of disability, the role of multiple risk factors, and the opportunity for intervention, it is essential that a ''lifecourse" perspective be given more attention in research. This research, however, must be undertaken within a theoretical or conceptual framework that emphasizes the important role of nonmedical factors in influencing outcomes. Individuals vary greatly in their ability to adapt to an impairment or functional limitation (Yelin, 1989; Wilson and Cleary, 1995). Variability in outcome depends on a host of personal, social, and environmental factors, many of which are not addressed adequately in rehabilitation services and outcomes research. Some might argue that such studies do not fall strictly under the purview of health services and outcomes research since many of the services aimed at getting people back to work are focused on educational and training interventions and relate to broader social issues. Yet it is apparent that many of the failures in getting people back to work after the onset of a disabling condition (and keeping them employed) are due to the fragmented nature of the services provided and the lack of communication between the providers of health services on the one hand and psychosocial and vocational services on the other. Better ways to integrate these services are needed. Outcomes studies must take a broad perspective in looking at the multiple determinants of recovery so that appropriate interventions can be identified and effectively targeted. A major challenge of rehabilitation services research is defining and improving the interface between the traditional health care system and the social and vocational services system. Application of CBA/CEA Cost-benefit analysis and cost-effectiveness analysis (CBA/CEA) of rehabilitation services can be greatly strengthened by incorporating a broader scope of outcome measures. More global measures can facilitate comparison and integration of results across types of disabilities and programs and thereby enhance the power of the analysis. Efforts to incorporate outcomes measures based on consumer input are also important. To date, CBA/CEA studies that value outcomes have tended to focus on measures such as increases in earnings or reduced costs of related public services. The consumer's own valuations of greater community integration, improved quality of life, and increased independence have not been factored into the CBA/CEA calculations. Thus, CBA/CEA have omitted major aspects of program effectiveness that should be recognized if the full value of rehabilitation service programs is to be reckoned.

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--> In the broader health services literature on CBA/CEA, more global outcomes measures based on consumer input and valuation have only recently become widely recognized. The use of these measures has become the focus of a new subfield within health services CBA/CEA, commonly referred to as "cost-utility" analysis (Russell et al., 1996). Extending this cost-utility literature to rehabilitation services is an important research priority. Broad Framework of Health Systems Finally, it is important that the effectiveness of rehabilitation services and programs be examined within the broad context of the entire health care system. J. Paul Thomas (p. 36) points to the lack of this broader perspective as a serious deficit in rehabilitation services research and training: "It fails to impart an adequate understanding of the larger American health care system of which we are all a part. If we evaluate the efficacy of our clinical efforts without considering the larger health care system, much of our work may become irrelevant and of little use to our clientele" (Batavia et al., 1991). In an effort to reduce the lengths of stay for hospitalization, for acute care, patients are being discharged earlier, often with a poorer functional status. This approach to cost-containment for hospitalization for acute care is likely to increase the demand for and expenditures associated with outpatient rehabilitation. In the long run, however, overall costs for achieving equivalent, if not better, outcomes may be lowered. It may well be that in an effort to reduce overall costs of health care, the volume and total expenditures for rehabilitation may, in fact, increase (or remain stable). The appropriate timing, intensity, and mix of rehabilitation services may accelerate the recovery process as well as decrease the long-term demand for acute care services for secondary conditions. Thus, the development and application of an "episode approach" to examining the relationship between the use and costs of services (both acute health care and rehabilitation) and outcomes should be given high priority. It is also important to emphasize that many of the problems associated with poor outcomes in rehabilitation relate back to problems of access to services and its relationship to health insurance and employment (National Council on Disability, 1993). Clearly, these issues are prominent in the national debate on health care reform. Therefore, any studies of access and its relation to outcome must be undertaken in the context of this debate. Assessing and Meeting the Primary Health Care and Long-Term Support Needs of People with Disabling Conditions A much-neglected HSR issue in rehabilitation and engineering is the organization, delivery, and cost-effectiveness of services aimed at the pri-

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--> mary health care and long-term support needs of people with disabling conditions (Batavia and DeJong, 1990). These services are critical to the prevention of secondary conditions and to the maintenance and improvement of function and well-being over the lifecourse. Yet little attention has been paid to the development of a coherent policy on the provision of these services for people with physical limitations. The committee has identified three broad areas of research that should be given high priority to ensure that people with disabling conditions receive the appropriate primary care and support services they need and are afforded every opportunity to achieve independence, equality, full participation, and economic self-sufficiency. These areas are consistent with the research priorities established at a national consensus conference focused on the primary health care needs of people with physical disabilities (DeJong et al., 1989; Burns et al., 1990). Primary Health Care Needs and Impediments to Access to Services First, it is important that a better understanding of the primary health care needs of people with disabling conditions and the barriers that impede access to appropriate services be developed. Intrinsic to primary care practice is the promotion of health and the prevention of disease through a sustained partnership between patients and clinicians and within the context of family and community (Institute of Medicine, 1996). In this regard, access to appropriate primary health care is as important to people with disabling conditions as quality medical rehabilitation aimed at restoring function. People with disabling conditions are not only susceptible to acute and chronic health conditions that are typically associated with aging or exposure to environmental hazards or unhealthy lifestyles, but they are also at risk of secondary conditions directly related to their primary condition. It is well known that people with disabling conditions are particularly vulnerable to acute health problems such as decubitus ulcers, urinary tract infections, and contractures. The Centers for Disease Control and Prevention (CDC) through their community based surveillance and prevention programs have fostered the wide recognition of secondary conditions as a significant health problem among persons with disabilities (Graitcer and Maynard, 1990; Toal et al., 1993). These problems not only affect individual quality of life but are also associated with high health care costs, often paid for by public sources. Although a better understanding of the factors related to their incidence is still needed, there is substantial evidence to suggest that many of these problems are avoidable through the promotion of self-care and counseling, screening for early detection, appropriate and timely treatment, and early recognition and reduction of known risk factors (Marge, 1988; Institute of Medicine, 1991; Toal et al., 1993).

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--> Somewhat less is known about patterns in incidence of chronic health problems among people with disabling conditions. There is some evidence to suggest, however, that because of their low margin of health, people with disabling conditions are at risk of developing common chronic health problems such as heart disease and arthritis at an earlier age than the general population (Burns et al., 1990). Furthermore, the impacts of these problems on the individual are often magnified due to the presence of the underlying limitation or disability. More work is needed to better understand the risk of chronic disease among people with disabling conditions. Even more important, however, is research on effective ways of reducing known risks or ameliorating the consequences of common chronic conditions among people with disabling conditions. Much attention has been focused in recent years on the development and evaluation of effective health promotion and disease prevention strategies for reducing an individual's risk of chronic conditions (U.S. Preventive Task Force, 1989). These strategies include protocols for weight reduction, regular exercise, reducing substance abuse, as well as ensuring access to and use of screening protocols for heart disease, cancer, and diabetes. Although some of these strategies may be directly transferable to people with physical limitations, many are not (De Jong et al., 1989; Patrick et al., 1994). Although one can effectively argue for the importance of primary care services for people with disabling conditions, little is known about how they are accessed and used and even less is known about their quality and impact on well-being and costs. What is known is that existing services are fragmented and often inadequate in addressing (in a timely and cost-effective manner) the constellation of health problems experienced by people with disabling conditions once they are discharged from rehabilitation. Primary care providers are not typically trained to recognize the general health care needs of people with disabling conditions. In the absence of this training, they too often focus on the specific limitation and underlying physical and cognitive impairment and not on the individual's increased susceptibility to acute and chronic health conditions. It also happens that primary care providers who are ill-equipped to address the multiple health problems of a person with a disabling condition inappropriately make referrals to multiple specialty care providers, often resulting in delayed treatment and high health care costs (DeJong et al., 1989). More research is needed to define indicators of quality primary health care for people with disabling conditions and the factors that impede access to appropriate use. This research should refine existing frameworks that have been developed for looking at access, use of and quality of primary health care, and incorporating parameters that are particularly relevant for people with disabling conditions (IOM, 1993, 1996). In identi-

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--> fying factors related to the use of services, for instance, existing frameworks often underemphasize the role that unrecognized need and provider attitudes and perceptions play in accessing and using services. Furthermore, quality indicators do not typically address issues of consumer empowerment and the important role that nonmedical support services play in maintaining health and avoiding hospitalizations (Burns et al., 1990). Access to Use and Quality of Long-Term Support Services Related to issues of access to and quality of primary health care are issues related to the access, use, and quality of long-term support services. The need for long-term support services to assist people with a disabling condition compensate for a functional limitation is well recognized. These services generally consist of attendant or personal assistance services, assistive technology, as well as institutional care for people with very severe limitations that require daily assistance from medical personnel. Not only do these services help the person with a disabling condition maintain his or her health, but they are also often required for performing activities of daily living comfortably and safely. In many cases, adequate attendant services and assistive technology provide an effective alternative to institutional care. There are very few published studies, however, that scientifically demonstrate the value of these services in improving health and well-being while reducing overall costs to the health care system and society at large (Nosek, 1993). The conduct of these studies will be critical in arguing for adequate coverage of these services by insurers and managed care organizations. The importance of research on the access to and cost-effectiveness of support services was highlighted at the consensus conference on research priorities in the area of primary health care needs of people with disabling conditions mentioned above (Burns et al., 1990). Developing a better understanding of how personal attendant services are used and financed and their impact on the health and well-being of people with disabling conditions was consistently ranked among the highest priorities. Of particular note is that conference participants ranked access to appropriate attendant services as the number one issue to be addressed in reducing the high rate of rehospitalization among people with disabling conditions. Quantitative research is needed to establish the extent and nature of the relationship between personal assistance and health. It is important that research focused on the use of and value of long-term support services recognize the critical role of the consumer in framing appropriate research questions and developing appropriate indicators of access and quality (Williams, 1994). Often, too little attention is paid to the needs and preferences of the consumer, leading to dissatisfac-

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--> tion with services, and the disuse and abandonment of technologies. In a review of the literature on the use of prosthetic devices by lower limb amputees, Grisé and colleagues (1993) found that rates varied considerably from 47 to 96 percent. They attribute these differences to variable case definitions as well as to inconsistencies in the definition of "successful prosthetic use." The studies reviewed were even less consistent regarding the factors that influence use and typically did not relate use to functional outcomes and quality of life. Some effort has been directed, however, in developing useful frameworks for looking at these issues. Grisé developed a framework for identifying the predisposing, enabling, and reinforcing factors that are likely to influence use of prosthetic devices. Batavia and Hammer (1990) used a small focus group to develop consumer-based criteria for the evaluation of the quality of assistive technologies (Batavia and Hammer, 1990). Similar efforts are needed to assist in the evaluation of personal assistance services (Ratzka, 1986; Nosek, 1993). Organization and Financing of Primary Health Care and Long-Term Support Services A third critical area for future research pertains to the organization and financing of both primary health care and long-term support services for persons with disabilities. A major (although clearly not the only) barrier to accessing and appropriately using primary care and long-term support services relates to how these services are organized within the current health care system and how they are financed. The coordination of these services together with more traditional medical rehabilitation services is critical for ensuring life-long continuity of care. The role of innovative approaches to the organization and financing of these services to ensure this coordination and integration should be given high priority in the HSR agenda for rehabilitation and engineering. The issues that need to be addressed in the context of this agenda are discussed in more detail below. It should be emphasized here that in studying how support services, in particular, are organized and financed, it is critical that a better understanding of the appropriate role of the informal caregiver be developed. Recent reports indicate that only a small proportion of those needing these services are receiving them from formal caregivers (Nosek, 1993; Ratzka, 1986). In most cases family members are providing the assistance. Although research is limited regarding the impact of these arrangements on the family environment, there is sufficient evidence to raise serious questions about the wisdom of this approach in many cases. At the same time there is also evidence to suggest that the care rendered by informal caregivers is not always as effective as the care provided by paid, non-family members. More research is needed to better understand the trade-

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--> offs involved in providing personal assistance through formal versus informal caregivers. In doing so, it will be important to develop adequate measures of the quantity and quality of service use. Also, when comparing costs of formal versus informal assistance, both direct expenditures as well as indirect costs accruing to family members should be examined. Impact of Managed Care The increasing trend toward managed care in both the public and the private sectors will no doubt have a significant impact on people with disabling conditions. Although good information is lacking regarding the participation of people with disabling conditions in managed care plans, there is evidence to suggest that the percent who are enrolled in some type of managed care organizations (MCO) is similar to that estimated for people without disabling conditions (DHHS, 1995). It will be important for the field of rehabilitation science and engineering to work closely with health services researchers to proactively evaluate the potential impacts of various models of managed care on access to and use of services, quality of care, costs, and outcomes. The term managed care has been used to describe a diversity of integrated service delivery models proposed as alternatives to the traditional fee-for-service indemnity health insurance plan (Weiner and de Lissovoy, 1993). These alternative delivery systems range from managed indemnity plans in which the insurer uses a variety of utilization controls to manage the practices of its providers (who are still paid on a fee-for-service basis) to health maintenance organization (HMOs) or prepaid organized delivery systems where physicians are typically paid on a capitation basis but have financial incentives linked to productivity and efficiency. What these models have in common is an integrated approach to managing service delivery for an enrolled population. The goal of managed care is to "control health care costs and improve access to and continuity and coordination across a continuum of services." (DHHS, 1995). If this goal were truly realized, a managed care approach to the delivery of health services and health-related services for people with disabling conditions would hold great promise. At present there is little evidence to judge whether or under what conditions these goals can in fact be met. The disability community, however, remains skeptical about the potential success of managed care in meeting its present and evolving needs (see Focus Group discussion in Appendix A). This skepticism is largely based on a lack of information and meaningful evaluation of currently proposed service delivery models. Most of the research and evaluation to date on the impact of managed care for people with disabling conditions has focused on elderly people (DHHS, 1995). A

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--> variety of demonstrations have been mounted with funding from the public and private sectors. These include the Social Health Maintenance Organizations (SHMOs), the Program of All Inclusive Care for the Elderly (PACE), and HMOs established under the Medicare Risk Program (and implemented under the Tax Equity and Responsibility Act or TEFRA). These programs have met with varying success; a largely unanswered question is the extent to which they can be successfully extended to younger populations (DHHS, 1995). The Office of Disability, Aging and Long-Term Care Policy (of the Office of the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services) has developed a comprehensive research agenda on managed care and disability. The committee endorses this agenda and recommends that federal and private funding agencies use it as a template for establishing their individual priorities in this important area of research. Some of the critical research questions identified in the report include the following: What is the impact of different managed care models on access to and use of rehabilitation professionals such as occupational therapy, physical therapy, speech-language therapy, audiology, cognitive therapy, and assistive technologies? If MCO case managers have a good understanding of the service needs and preferences of people with disabling conditions, one can envision systems in which increased access to an appropriate mix of services (i.e., preventive versus curative services and community-based versus institutional care) may result in lower overall costs, increased consumer satisfaction, and better outcomes. Most of the documented and anecdotal evidence accumulated to date, however, suggests that MCOs (particularly private MCOs) are increasingly restricting access to and use of rehabilitation services primarily through the imposition of annual or lifetime caps on use (DHHS, 1995). The impact of these restrictions on consumer outcomes has not been adequately evaluated. Better classification systems and casemix measures are needed to prospectively estimate the services and resources needed to care for people with disabling conditions within an MCO environment. There has been limited success in developing such systems and measures for use in setting hospital reimbursement rates for people with physically disabling conditions. The extent to which these approaches can be used in the context of an MCO has not been evaluated but may hold some promise (Wilkerson et al., 1992; Harada et al., 1993; Stineman et al., 1994). Further research is also needed to evaluate the widely held belief that if MCOs covered needed services on a long-term and ongoing basis that secondary conditions would be avoided and costs savings would be realized through a decrease in hospitalizations

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--> To what extent and how should both acute care and long-term support services be integrated into a single, consolidated managed care arrangement? What models of integration are most promising? As described above, personal assistance services are critically important to the enabling process. Integrated service delivery models that offer and coordinate long-term care and support services in addition to acute care have the potential of reducing overall health care costs while improving consumer health status and quality of life. Substantial cost savings can be realized since personal assistance and support services are often a less expensive alternative to institutional care. Integrated systems range in character from vertical integration in which all services are provided under a capitated arrangement and within a single delivery system to network arrangements in which providers coordinate services across a wide range of settings (Weiner and de Lissovoy, 1993). A limited amount of research has been focused on the success of these alternative models for integrating services. Again, most of this research has focused on frail elderly people and is process as opposed to outcomes oriented. One exception to this rule has been the evaluation of Boston's Community Medical Alliance (CMA), which is one of the first MCOs to target services exclusively to adults with severe disabling conditions (Meyers and Masters, 1989). Limited evaluation of this program suggests both cost savings and quality care. Critical to this area of research is the development of metrics for assessing the degree of integration. What are the advantages and disadvantages of designing and implementing specialized managed care systems for people with disabling conditions (so-called targeted MCOs) versus models that include people with disabling conditions along with the general population? A related question is whether it is more effective and efficient for a targeted MCO to address the needs of all people with potentially disabling conditions versus those of one particular subpopulation (e.g., people with spinal cord injuries)? Although there would appear to be several advantages to MCOs that specialize in managing service delivery for people with disabling conditions, there are major concerns regarding the fiscal viability of such programs. Further concern is raised about the potential for developing a separate but unequal health care system for people with disabling conditions that is constrained in its practice because of limited resources, thereby resulting in inferior care. Although several plans with a targeted focus on delivering care to people with disabling conditions have been implemented, their evaluation has been limited or absent. More research focused on this critical element in the design of MCOs should be given high priority.

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--> What are the advantages and disadvantages of various risk-sharing arrangements and risk adjustment methods to MCOs? There are few if any financial incentives that presently encourage MCOs to include people with disabling conditions in their practice plans. Given current knowledge, it is exceedingly difficult to predict the costs associated with serving a population with disabling conditions, making it difficult for MCOs to set reasonable and realistic rates. Moreover, if higher premiums are charged, healthier, low-risk participants are likely to disenroll in favor of lower-cost plans. It is critical that more effective strategies for spreading financial risk between payers and providers and between providers and plans be developed and evaluated. For instance, partially capitated or specialty carve-out programs that incorporate reinsurance or stop-loss provisions are used by many states to encourage MCOs to serve high-risk populations. The success to which these programs can effectively serve the needs of people with disabling conditions while ensuring that providers are protected from large financial losses must be examined. Another important focus of research efforts should be the development of improved methods of risk adjustment. The development of effective adjustment methods has been difficult due to the wide variability in service needs and utilization among people with disabling conditions as well as the disproportionately high use by a small and unpredictable subgroup of the population. For the most part MCOs currently rely on prior utilization and cost data to forecast expected expenditures. There is a growing consensus, however, that effective risk adjustment methods must incorporate appropriate measures of functional status to better predict potential resource utilization and costs (Wilkerson et al., 1992; DeJong and Sutton, 1994; Heinemann et al., 1994, Stineman, 1995). In summary, much work is needed to better understand the advantages and disadvantages of various managed care models of service delivery. In conducting this research it will be important to carefully distinguish among the range of managed care arrangements and practices and to determine what aspects of each are associated not only with lower costs but also with improved outcomes and consumer satisfaction. To do this, the field of rehabilitation science and engineering must develop appropriate measures of quality of care that are relevant to the ongoing and lifelong needs of people with disabling conditions. It will also be important to examine the impact of managed care for people across the broad spectrum of types and levels of disabling conditions since service needs and effective strategies for addressing these needs may vary substantially. Finally, the needs of the working age population need to be of higher priority in the development and evaluation of new strategies to provide sufficient care.

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--> Summary This chapter has attempted to summarize some of the health services research issues in rehabilitation and engineering that deserve priority attention. It is clear that what is needed to address each of these issues is better data and access to information systems that can be used to identify needs and evaluate access, use, quality, outcomes, and costs of services to address these needs. The Interagency Committee on Disability Research through its Disability Statistics Subcommittee has reviewed in detail the federal databases that include information about disabling conditions. They point to several inadequacies of these databases, including lack of uniform definitions of disability, a lack of attention to the needs of children and working age people with disabling conditions, limited measures of disability that do not encompass dimensions of health beyond activities of daily living, as well as the decentralization of many data systems. In addition, there exist no longitudinal or panel data maintained on a national level to track the needs of people with disabling conditions over the lifecourse. The 1994-1995 Disability Supplement to the National Health Interview Survey (NHIS) was the first exhaustive survey on disabling conditions undertaken since 1978 (see Chapter 2). It holds great promise as a rich source of data on many issues important to the agenda in HSR research in rehabilitation science and engineering. Unfortunately, the 1994-1995 Disability Survey is currently planned as a one-time supplement to the NHIS. Developing the supplement into a panel study would be of enormous value to the research community. Developing a Health Services Research Capacity in Rehabilitation Science and Engineering To address the research agenda discussed above adequately, it will be important to develop a stronger HSR capacity in the field of rehabilitation science and engineering. As previously discussed, there is little interaction between traditional rehabilitation researchers on the one hand and health services researchers on the other. Few providers of rehabilitation have been adequately trained in the methods needed in HSR. At the same time, few health services researchers have focused their work on issues related to the organization, delivery, financing, and quality of services for people with disabling conditions. The field of aging research has established an extensive HSR agenda focused on elderly people with disabling conditions. Yet there is still very limited interaction between this field and the disability and rehabilitation research community. Often, the two fields speak different languages and espouse different paradigms for examining similar issues. The values and perspectives of both are important and

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--> should be better integrated to address the multiplicity of issues in ensuring that services to people with disabling conditions of all ages are provided in a cost-effective and cost-efficient manner. The committee recommends two approaches to facilitate the development of a broader HSR capacity in rehabilitation science and engineering. First, it recommends that transdisciplinary doctoral and postdoctoral training programs be developed in HSR with a concentration in rehabilitation science and engineering. These programs should be designed both for clinicians who require additional training in the issues and techniques of HSR as well as for health services researchers who are interested in applying their knowledge and skills to the study of rehabilitation service delivery. The training programs should emphasize the cross-disciplinary and interdisciplinary nature of the field. Several federal programs have endorsed the establishment of training programs as a high priority. Often, however, these priorities are not translated into appropriations of sufficient funds. Furthermore, few opportunities exist for training specific to HSR. A second strategy for developing the HSR capacity is the establishment of Centers for the Organization, Delivery, and Financing of Health and Health-Related Services to People with Disabilities. These centers should be collaborative ventures across departments and schools in a university setting that has well-established programs in both rehabilitation science and engineering as well as health services research. One possible model that can be used in establishing these centers is the one used by the National Institute of Mental Health to establish its Centers on the Organization and Financing of Care to People with Severe Mental Illness. These centers have been very successful in forwarding the agenda in HSR and mental health through the establishment of transdisciplinary research collaborations and training and the creation of a sustaining environment to support researchers and research. The Injury Prevention and Research Centers funded by the National Center for Injury Control and Prevention at the CDC have also been successful in forwarding the research agenda needed to reduce the incidence and impact of traumatic injuries. These centers, which currently number 10, are specifically designed to integrate multiple disciplines in addressing the prevention and control of injuries. They have successfully stimulated the development of new teams of injury researchers that have been critical to the development of the science of injury control. Recommendations Recommendation 7.1 Highest priority should be given to research in the following three areas:

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--> •   Cost-effectiveness of specific clinical interventions and service delivery systems. This research should incorporate a broad range of outcomes including impairment, functional status, and quality of life as measures of clinical and program effectiveness. •   Access to and organization and delivery of services that address the primary health care and long-term support needs of people with disabling conditions. The impacts of these services on the prevention of secondary conditions and promotion of well-being over the lifecourse should be given the highest priority. •   The impact of managed care on access to and use of services, quality of care, cost, and outcomes. This work should extend beyond the evaluation of Medicaid and Medicare programs to include assessment of innovative programs targeted at working-age adults. Add-ons to major demonstrations of managed care delivery systems should be funded. These add-ons should specifically examine the impact of managed care on people with disabling conditions. Recommendation 7.2 Establish Centers for the Organization, Delivery, and Financing of Health and Health-Related Services to People with Disabilities. These centers should be collaborative ventures across departments and schools in a university setting and should incorporate components of research, teaching, and community outreach service. Recommendation 7.3 Develop transdisciplinary doctoral and postdoctoral training programs in health services research with an emphasis in rehabilitation and engineering. These programs should be designed for both clinicians and nonclinicians and emphasize the cross-disciplinary and interdisciplinary nature of the field. Special efforts should be made to encourage and facilitate such training among persons with disabilities. Additional funding would be required to support this activity. Recommendation 7.4 Develop and maintain longitudinal databases that track the health care needs of people with disabling conditions, their use of services, and outcomes or health status. Specifically, the 1994-1995 Disability Supplement to the NHIS should be developed into a panel study and supported over time to perform maintenance and analysis activities. Additional funding would be required to support this activity.