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8 Leadership for Developing Emergency Medical Services for Children The committee has, by now, clearly set forth its support for two goals: ensuring the development of high quality emergency medical services for children (EMS-C) as integral components of existing emergency medical services (EMS) systems and ensuring strong links to the broader realm of child health care. Although the committee's charge refers only to emer- gency medical care, its positions rest on the belief that society has a special obligation to attend to the health care needs of children. They depend on others for their care and have no independent political voice through which they can make their needs known. At present, EMS-C has significant shortcomings. Many can be attrib- uted to insufficient integration of EMS-C with other areas of health care. In particular, we note inadequate attention to the needs of children on the part of an emergency care system developed to meet the needs of adults from emergency dispatch centers to emergency transport systems, emergency de- partments (EDs) and intensive care, and rehabilitation and support services in the community. We record also inadequate attention to children's emer- gency care needs on the part of the pediatric community, which has tradi- tionally focused heavily on primary care. Overcoming these problems will require efforts on many fronts and by many people. Currently, however, EMS-C has neither a readily identifiable source of authoritative and visible leadership nor any forum for cooperative efforts that can coordinate the activities that the committee proposes. The committee is heartened to see that clear weaknesses in EMS-C have begun to receive much needed attention. It concludes, however, that 280

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LEADERSHIP FOR DEVELOPING EMS-C 281 further work is required in several areas to bring both the quantity and the quality of EMS-C to appropriate levels across the country. As presented in preceding chapters, these areas include: . education and training for the public, for health professionals gener- ally, and for emergency care providers specifically; ~ organization and delivery of care' especially regarding equipment' protocols and guidelines, medical control, categorization of facilities, and regionalization of care; communication, including universal adoption of 9-1-1 for telephone access to the emergency system and movement toward enhanced 9-1-1; and planning and evaluation, including efforts to institutionalize a na- tional uniform data set appropriate for EMS-C and to require reporting of ICD-9-CM E-codes for injury diagnoses, and augmented research activi- ties. As a way to focus attention and resources on efforts to improve EMS- C, the committee sets forth in this chapter recommendations for establishing EMS-C agencies at the federal and state levels and discusses the rationale for its position. It reviews the broad range of parties whose representation is essential, chiefly through national or state advisory councils to these agencies; it also discusses the issues that should be high on the agenda of such bodies. Finally, the committee considers the value of such an ap- proach for accommodating the very diverse needs, resources, and organiza- tional characteristics that individual states and localities bring to efforts to improve emergency medical care for children. THE DISJOINTED "SYSTEM" OF TODAY Response to the committee's diverse concerns regarding EMS-C calls for leadership in many circles because of the complicated nature of the "system" in which EMS-C operates. Changes in training programs for physicians, for instance, need to be implemented by bodies very different from those that ensure that ambulances carry appropriate equipment or those that institute 9-1-1 telephone systems. Interested parties include various agencies in the federal government, elements of state and local govern- ments, hospitals and their component departments, EMS agencies, individual health care and emergency services providers, professional organizations, community groups, and the public. Each group has its particular priorities and opportunities for action, but there are common concerns that each of those groups should know about and take into account within their separate spheres. Across the country, communities have developed EMS systems that reflect local conditions and expectations. Ideally, these systems coordinate

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282 EMERGENCY MEDICAL SERVICES FOR CHILDREN the activities of the separate pieces, helping them work together in a smooth, consistent, and effective fashion. The pieces remain, nevertheless, under the jurisdiction of largely independent entities, whose priorities and con- cerns may not always be consistent with those of the system or its other component parts. This fragmentation of responsibility and authority for emergency care services can hinder optimal day-to-day operations and make long-term system planning difficult. It also creates many independent chan- nels through which changes such as those sought by the committee must be pursued. Many states and localities attempt to overcome some of this fragmenta- tion through EMS advisory councils, which can bring together representa- tives from many areas of interest and expertise. These standing bodies, often legislatively mandated at the state level, have varying responsibilities, authority, and structure. They represent an existing mechanism through which some EMS-C issues might be addressed, but their scope is at once too broad and too narrow to be able to address the full range of EMS-C concerns raised by the committee. For instance, these advisory bodies must concern themselves with services to patients of all ages, but generally only for prehospital care. Part of the vision advanced in this report is that EMS- C must concern itself with a broader range of services running from preven- tion through primary care, inpatient care, and rehabilitation in addition to the traditional prehospital and ED concerns. Federal efforts have played an important part over the past 25 years in promoting the development of EMS systems across the country. The lim- ited federal role in the delivery of emergency medical care has rested largely with the health care systems of the Indian Health Service in the Department of Health and Human Services (DHHS) and the Department of Defense (DOD).2 Much more important have been program guidance and funding from DHHS and the Department of Transportation (DOT), but DHHS con- tributions to EMS were significantly curtailed in the early 1980s, when dedicated funding was abandoned in favor of block grants. DOT's National Highway Traffic Safety Administration (NHTSA) has been the one federal office with a continuing program in EMS since the late 1960s. Since 1984, the federally funded EMS-C demonstration grant program, administered by the Maternal and Child Health Bureau (MCHB) of the Health Resources and Services Administration (HRSA) in DHHS, has given valuable assistance to states and localities to begin to address EMS-C, but it does not provide for ongoing activities at the federal or the state level. Further, it has not served (nor was it designed) to establish and maintain links among the many federal activities related either to emergency care or to child health (although it has promoted informal networking among state EMS-C programs). Neither was creation of an EMS-C advisory body with a role for experts and interested parties outside the federal government

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LEADERSHIP FOR DEVELOPING EMS-C 283 within its mandate. With the adoption of the Trauma Care Systems Plan- ning and Development Act of 1990 (Public Law [P.L.] 101-590), HRSA's role in EMS-related activities has expanded; an advisory council, grant awards, and other program activities will be directed toward assisting states to im- prove their trauma systems. Professional organizations, such as the American Academy of Pediat- rics (AAP), the Ambulatory Pediatric Association, the American College of Emergency Physicians, the American College of Surgeons, and the Emer- gency Nurses Association, have served as focal points for bringing attention to EMS-C concerns. Given their national memberships, such organizations can help spread interest in EMS-C across the country. For example, the AAP reaches a broad spectrum of pediatric primary care and hospital-based practitioners. At the same time, it does not encompass in its membership other providers, such as nurses and emergency medical technicians (EMTs), who are important participants in emergency care services, and it also has no formal link with the public agencies that are responsible for many as- pects of EMS. Thus, the responsibility for promoting more cohesive and comprehensive EMS-C efforts cannot rest entirely on the shoulders of pro- fessional groups. A FOCUS FOR EMERGENCY MEDICAL SERVICES FOR CHILDREN In sum, progress in improving the quality of emergency care given to children and the readiness of EMS systems to provide that care depends on ensuring that essential EMS-C components become an integral part of both EMS in general and the broader realm of child health care. To promote that integration, EMS-C needs to be given recognition and priority in both areas. As a means of bringing this level of attention to EMS-C issues, the com- mittee recommends that Congress direct the Secretary of the Depart- ment of Health and Human Services to establish a federal center or office to conduct, oversee, and coordinate activities related to planning and evaluation, research, and technical assistance in emergency medical services for children. The committee also recommends that Congress direct the Secretary to establish a national advisory council for this center; members should include representatives of relevant federal agencies, representatives of state and local governments, the health care commu- nity, and the public at large. Although some might argue that establishing a formal EMS-C center or office is not necessary, the committee concluded, after considering alterna- tives, that lesser steps would not be adequate.3 The Secretary could assign this EMS-C responsibility to an existing agency or give it to a newly cre- ated entity. Either way, the committee emphasizes two concerns. First,

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284 EMERGENCY MEDICAL SERVICES FOR CHILDREN EMS and EMS-C are important matters of health and health care in which DHHS must assume a leading role. Second, past experience suggests that children's needs will not be adequately represented without an identifiable . . . . institutional voice. Furthermore, the proposed federal center can provide a national frame- work within which to encourage the continued efforts of the many indiYidu als and organizations across the country that have been responsible over the past decade for bringing EMS-C issues to the attention of health care pro- viders and EMS systems. The EMS-C center will be in a position to con- tribute to the long-term success of efforts to formulate widely recognized and consistent goals for EMS-C. Because the organization and delivery of emergency care services rest not with the federal government but with state and local governments and health care providers in the private sector, action at the federal level alone is not sufficient. Therefore, the committee further recommends that states establish a lead agency to identify specific needs in emergency medical services for children and to address the mechanisms appropriate to meeting those needs. The committee also recommends that state advi- sory councils be established for these agencies; members should include representatives of relevant state and local agencies, the health care com- munity, and the public at large. In making this recommendation, the committee emphasizes that its call for an EMS-C agency is not intended to isolate EMS-C from other EMS activities or to promote development of separate EMS-C systems; rather it is intended to ensure that EMS-C issues are visible and have adequate representation. These two pairs of major recommendations for agencies at both the federal and state levels take as their starting point the myriad issues con- fronting EMS-C that were detailed in earlier chapters. The next section of this chapter explains the functions of the proposed federal center more fully, and the subsequent section addresses functions of the proposed state agen- cies.4 The final sections address questions of funding and examine further some of the obstacles to successful implementation of entities of this sort and how those challenges might be met. A FEDERAL CENTER FOR EMERGENCY MEDICAL SERVICES FOR CHILDREN Charge and Agenda National leadership is essential to improving the quality of EMS-C across the country. In the committee's judgment, a federal EMS-C center or office can be a significant vehicle for exercising that leadership, demon- strating through its activities a commitment to EMS-C at the highest levels

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LEADERSHIP FOR DEVELOPING EMS-C 285 of government. This center should be charged and authorized to propose federal policies and carry out programs in two main areas. The first part of the charge to a federal EMS-C center presupposes a national perspective and targets the following eight areas:5 1. developing a national strategy; 2. coordinating efforts throughout the federal government; 3. disseminating information and providing for a clearinghouse function; 4. improving access to care; underscoring medical illness as a special concern in EMS-C; 6. assisting education and training efforts; 7. collecting and analyzing data; and 8. supporting enhanced research efforts. The second part of the charge to a federal EMS-C center aims to foster state and local efforts, with three main thrusts: 1. creating incentives for state action; 2. providing technical assistance; and 3. encouraging regional coordination. Developing a National Strategy Perhaps the highest priority for the federal EMS-C center is to develop a clear national strategy for ensuring that the emergency care needs of children are met. As a nationally recognized entity that can represent or respond to many interests, the EMS-C center together with its national advisory council would be able to speak to such a broad need in an authori- tative voice not always available to other groups. It should lay out a strat- egy that is in keeping with the health promotion and disease prevention objectives of Healthy People 2000 (DHHS, 1991~. An evaluation of the effectiveness of projects supported under the demonstration grant program could provide valuable guidance as a strategy evolves. Secondarily, the EMS-C center needs to consider various practical, po- litical, and logistics issues that emerge directly from that strategy. Opportu- nities must exist for review and revision, with the implicit expectation of public accountability. Annual reports for example, to the Secretary of DHHS, to Congress, or to "the public" can help the center meet that re- sponsibility. Such yearly (or otherwise regular and periodic) reports, from either the center or its national advisory council, might analyze the results of EMS-C efforts across the nation for instance, in data collection and analysis and progress on a uniform EMS data set. Such reports might examine where revised policies and procedures are needed and develop specific research questions and hypotheses warranting future investigation.

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286 Coordinating Federal Efforts EMERGENCY MEDICAL SERVICES FOR CHILDREN As noted in earlier chapters, a variety of ongoing activities in federal agencies relate to EMS-C issues. In the past, no mechanism has existed for identifying or coordinating those activities. The EMS-C center should carry out that function. Given the aim of ensuring that EMS-C is integrated into broader emergency and child health cares the EMS-C center should be charged with increasing the awareness among such agencies of the place of children's emergency medical care needs in their programs. The center also might undertake a review of the statutory charges to these agencies in areas re- lated to EMS-C to identify existing opportunities for action. Of particular importance is work on EMS systems, trauma and trauma systems, injury prevention, rehabilitation, and pediatric critical care. Prominent work in these areas includes the activities in HRSA of the MCHB and the Trauma and Emergency Medical Systems Division. Major programs at NHTSA in DOT include curriculum development for training prehospital personnel, technical assistance in assessment of state EMS sys- tems and development of trauma systems, highway safety, and public edu- cation. Numerous agencies in DHHS have programs in relevant areas. At the Centers for Disease Control and Prevention (CDC), the newly created Na- tional Center for Injury Prevention and Control is intended to provide lead- ership in a broad national program related to nonoccupational injury pre- vention and control, with the aim of preventing premature death and disability from intentional injuries resulting from violent and abusive behavior and from unintentional injuries. Activities at the National Institutes of Health include research and education programs in asthma and emergency cardiac care at the National Heart, Lung, and Blood Institute; work on injury and injury surveillance at the National Institute of Arthritis and Musculoskeletal and Skin Diseases; work on child health, injuries, and medical rehabilitation at the National Institute of Child Health and Human Development; and shock and trauma research at the National Institute for Neurological Disorders and Stroke. Also in DHHS is the Indian Health Service (IHS), which delivers health care services to American Indian and Native Alaskan communities. The EMS-C center should also help bring to the attention of the EMS-C community those programs with less obvious but still relevant connections. A case in point is the set of programs in outcomes and effectiveness re- search, clinical practice guidelines, database development, and cost, quality, and access administered by the Agency for Health Care Policy and Research (AHCPR) in DHHS. Other relevant activities in DHHS include those of the National Center on Child Abuse and Neglect (NCCAN) and the Office of Disease Prevention and Health Promotion (ODPlIP), which are discussed below as possible models for the proposed EMS-C agency.

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LEADERSHIP FOR DEVELOPING EMS-C 287 The activities of the Health Care Financing Administration (HCFA) concerned with both Medicaid and Medicare should also be of interest. Medicaid relates directly to the health care coverage of children in low- income families. Medicare regulations, which apply principally to elderly patients,6 can also be important because they exert such a strong influence on hospital operations' phvs~c~an reimbursement' and the health care deliv- ery system generally. Among the other federal agencies with activities of interest for EMS-C include the DOD, farm safety activities of the Department of Agriculture, the Consumer Product Safety Commission of the Department of Commerce, the National Institute on Disability and Rehabilitation Research of the De- partment of Education, the Federal Communications Commission, and the Federal Emergency Management Agency. Disseminating Information One part of this broad scope to coordination is information dissemina- tion and exchange. To that end, the federal EMS-C center should provide for a clearinghouse for the products of various EMS-C grants and contracts that it awards over the years. These may well relate to education and training programs, planning and evaluation tools, results of data collection and analysis, communication techniques, and many other subjects identified in Chapters 4 through 7 of this report. The committee takes no stance on whether the clearinghouse function ought to be based "in-house" or be contracted to an outside group. It does argue, however, that the materials and documents catalogued, disseminated, and exchanged should have a di- rect bearing on the national strategy that the center formulates. Improving Access to Care Numerous factors can limit the availability of appropriate emergency medical care for children and can otherwise distort patterns of seeking and receiving nonemergency care, which in turn impinges on the EMS system. The EMS-C center should identify ways in which actions at the federal level can overcome some of those limitations or help states and municipali- ties to do so. One step is to consider what the appropriate federal role is in ensuring adequate staffing in hospitals and EMS agencies, particularly be- cause shortages are encountered in both urban and rural areas. It might, for example, review the issue of staffing "standards," as has been called for in other areas such as nursing homes. Consideration of staffing issues will also require that the EMS-C center take broader questions of availability of facilities (or units within facilities) into account. The continuing closures of rural hospitals can leave commu

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288 EMERGENCY MEDICAL SERVICES FOR CHILDREN nities dependent on facilities in distant towns and affect the availability of prehospital emergency services as well. In suburban and urban areas, some hospitals are closing their EDs, thus reducing the availability of services and increasing the burden on remaining facilities. Access to emergency services may also be affected by policies of health maintenance organiza- tions. Lack of health insurance and Iow provider reimbursement rates in the Medicaid program constrain access to primary care, which increases the demand for ED services in two somewhat conflicting ways. First, children are often sicker when they finally seek care, and second, they are often brought to EDs for routine care. The latter problem may actually be the more difficult to solve (and questions about the troubling prospects for EDs of the future are revisited in Chapter 9~. The EMS-C center, in concert with other appropriate federal agencies, should consider whether federal actions through Medicaid, MCH block grants, or other programs can help lower barriers to primary care and thus reduce the inappropriate use of EMS (particularly ED) services for nonurgent problems. These issues must be a serious concern because, as hospitals face increasing burdens from under- and uncompensated care, access to emergency care is threatened as well. Drawing Attention to Illness-Related Emergencies Emergencies from serious illness have, overall, received less attention than injury, yet illness is a major reason for young children, especially the very young, to require emergency care and hospitalization. As discussed in Chapter 7, for example, much less progress has been made for illness than injury in developing measures of severity. The EMS-C center should ensure that illness-related emergencies are not overlooked in the system develop- ment and research priorities of either federal programs or the provider com- munity. One step might be to ensure that groups engaged in trauma and trauma system research (from funders to researchers) are better connected to groups concerned with those illnesses likely to create emergencies in children (e.g., asthma, seizures, or certain infections). Finally, the EMS-C center should also work to guarantee that due attention is paid to outcomes of care, broadly defined to include functional, emotional, and other out- comes that matter to patients and their families. Enhancing Education and Training The value and effectiveness of the current potpourri of education and training programs and curricula in EMS and EMS-C remain in question. This committee has emphasized the role of the states in educational matters, but in its judgment the federal government has a role to play as well. In

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. LEADERSHIP FOR DEVELOPING EMS-C 289 particular, federal leadership could be pivotal in promoting appropriate con- tent of curricula, with an emphasis on components crucial to training in pediatric emergency care (such as assessment, cardiopulmonary and new- born resuscitation, trauma care, and management of severe illness). It should also ensure integration of EMS-C content into EMS educational programs. Finally' the federal c-enter could also develop ways to act as or support ~ clearinghouse through which proven, or innovative, curricular programs and other teaching materials might be shared. Collecting and Analyzing Data The committee believes that assembling a core of nationally comparable data on pediatric emergency care is essential. The current scarcity of data and the lack of comparability in the data that are available pose serious impedi- ments to assessment of emergency care needs, efforts to prevent injury and illness, evaluation of the care that is given, research on the clinical effective- ness of care, and research on the effective organization and delivery of care. Therefore, the federal EMS-C center should provide a locus for stable funding for the development of a national uniform core EMS data set to be used in nationwide surveillance of EMS-C systems and functions. This work should give particular attention to coding schemes that will categorize patients by disease process, acuity, and interventions and that will support periodic analyses and comparisons of local, state, and regional information. (The committee's preliminary proposal for some of the elements of such a data set appears in Chapter 7.) Consistent with promoting the adoption of a uniform data set, the committee believes that the EMS-C center should assume responsibility for developing a national EMS-C database and pro- viding, at a minimum, annual descriptive reports based on those data. In this work the center should consult with the National Center for Health Statistics in CDC to ensure that effective use is made of existing data and that new data sets are, to the extent possible, consistent with other relevant data programs. In short, a significant part of the work of the EMS-C center will be to define the federal role in EMS-C data collection and analysis. Similarly, the center should devise ways to support continued progress in methods to collect data reliably and in (near) real time. Advances in computer-based patient records, patient questionnaires, and trauma registry information systems illustrate the kinds of technologies and methods the center might investigate. It also should promote sharing of technologies and instruments for data collection that may be developed or adopted in various places around the country. In addition, the center should investigate the advantages and disadvantages of central registries of patients served by EMS systems that might enhance longitudinal surveillance. Controlling the costs of data collection must be a concern as well.

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290 EMERGENCY MEDICAL SERVICES FOR CHILDREN Finally, the federal agency assigned responsibility for EMS-C data should promote the use of those data for planning and evaluation at the national, state, and local levels. Thus, the EMS-C center must also work to make clear to funders and administrators the need for adequate resources (in the form of funding, personnel, and equipment) to support data collection ac- tivit~es' and it should promote reasoned allocation of those resources at the federal, state, and local levels. A special word is needed about measuring funding for and costs of EMS-C and EMS systems. As noted in several places throughout this re- port, assembling complete, reliable, and valid dollar figures on the costs, or benefits, of EMS systems (let alone EMS-C programs and services) is ex- tremely difficult. For example, programs appear in different parts of state, county, or city budgets (depending on where programmatic authority and responsibility lie); they are funded in different ways; and accounting sys- tems differ across states and municipalities. Costs borne by hospitals and other providers for uncompensated care can be hard to estimate as is the value of services provided by volunteers. Putting a dollar value on benefits is quite difficult, for a considerable number of methodologic reasons. Even more problematic are the difficul- ties, in ethical terms, of placing "value" on human life in general (and for the pediatric age range in particular) and on life-years saved, especially taking the quality of the lives saved into account. In fact, trying to move toward cost-benefit calculations may prove sufficiently demanding that policymakers and researchers may choose to focus on cost-effectiveness, where the equations would balance costs of services against effectiveness and outcomes not measured in dollar terms. Notwithstanding these challenges, credible numbers for the costs of EMS-C must be found, if the programs are to be held accountable, evalu- ated, and justified to an increasingly beleaguered public. For this reason, the committee advises that the federal center give early and strong priority to developing methods for generating good cost and cost-effectiveness data and to making the case to the states that they, in turn, will need to find ways to obtain these data. Both the federal and state advisory councils can be used to carry this message to the broad set of interested parties in both the public and private sectors. All such groups must come to understand (1) that progress will be impeded to the extent that believable cost and financ- ing numbers cannot be generated and (2) that all have a role in generating the relevant information. Supporting Research Finally, the committee sees the federal EMS-C center as one that can provide contract and grant support for targeted and investigator-initiated

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310 EMERGENCY MEDICAL SERVICES FOR CHILDREN areas of health care, environmental protection, criminal justice, and eco- nomic development. These constraints, coupled with considerable uncer- tainty about economic prospects and concerns about continued federal man- dates in programs such as Medicaid (Weissert, 1992), make states notably less likely than before to be amenable to assuming any new funding respon- sibilities, no matter how worthy. This may be an especially significant barrier in states requiring balanced budgets, such as (California and Michi- gan, where statutes would not permit them to finance EMS-C efforts with- out "paying" for them directly. The present lack of credible data on the costs and benefits of EMS-C, or on the marginal costs and benefits if such programs were expanded, makes arguing for such efforts more complicated. In the short run, propo- nents must to some extent fall back on clinical, ethical, and political reason- ing; but in the longer run, should the committee recommendations be force- fully acted upon, better cost, outcome, and effectiveness data should be available, ameliorating this problem to some extent. THE CASE FOR NEW ENTITIES TO ADDRESS EMERGENCY MEDICAL SERVICES FOR CHILDREN While fully aware that its recommendations for new federal and state entities may face some obstacles, the committee nonetheless firmly believes that ensuring adequate emergency medical care for children is of such sig- nificance that those obstacles must be understood, met, and overcome. In seeking to bring major attention to children's needs, the committee is not proposing to establish a new entitlement for children's medical care. In- stead, it is trying to ensure that children are not deprived of the level of care that is the expected norm for adult patients. EMS systems and EDs are widely assumed to be equally capable of caring for children and adults. In fact, this is not true. Children's needs have been (and continue to be) overlooked in emergency medical care, and the committee wants to see that oversight corrected.~4 In recommending the formation of federal and state centers and advi- sory councils for EMS-C, the committee believes that they can and will have the following special merits: . Advancing an ethical imperative. One might first consider the ethi- cal argument: Surely no compelling rationale exists for ignoring or downplaying the needs of children vis-a-vis those of nonelderly adults or the elderly.~5 Both the national and the state agencies and councils can make this point directly and forcefully to many different audiences. Counterbalancing the weakness of children as a political force. Be- cause children must depend on others for their care, the committee believes

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LEADERSHIP FOR DEVELOPING EMS-C 311 that society has a special responsibility to ensure that they receive appropri- ate care. Unlike adults, children have no political voice to raise on their own behalf in pursuing such care. Therefore, a voice must be raised for them. This committee's report is one such voice, but to sustain it, espe- cially at the state and local level, the committee believes that entities such as those described above will be necessary. Furthermore, advisory councils, in particular, are well suited to br~ng- ing to the table groups in the private sector that may, for whatever reasons, rarely if ever engage in productive discussions or negotiations about EMS or EMS-C. That is, councils can be, in effect, a neutral arena in which the various parts of the professional and health care delivery communities, the business sector, labor, the voluntary associations, and others can usefully exchange views and work toward mutually beneficial programs and ser- vices. Solid achievements along the lines of the recommendations in this report might have beneficial spillover effects for other knotty health policy issues in those states and localities. Providing visibility for an important health need. The committee is seeking to establish highly visible and prestigious focal points for address- ing EMS-C issues quickly and aggressively. It believes that the entities recommended in this chapter should be appointed by the Secretary of DHHS and the state governors in order to invest them with sufficient stature and influence to be able to bring to EMS-C issues the level of attention that they require. In the majority of states, a gubernatorial body has ample precedent to be a vehicle for serious policy deliberation and innovation; the same is true of secretarial-level groups. They ought to be able, therefore, to bring together the diverse groups that have important roles to play in EMS-C but which would otherwise lack an established means of working together. They would provide a channel for information and ideas to flow among a broad range of groups. Strengthening partnerships across federal, state, and local levels of government. These proposals at both the federal and state levels reflect the committee's position that neither level alone can adequately address the full range of issues that must receive attention. Some matters, such as develop- ing nationally comparable data or broad guidelines for education and train- ing, will benefit from the national perspective. Other matters, such as provider certification requirements or medical control procedures, which relate more directly to the delivery of care, are appropriately addressed at the state (or perhaps local) level. Substantial areas of overlap exist between national and state concerns for example, using federal funding to create incentives for state action, collecting and analyzing data, or disseminating the results of research and this factor should lead to coordination of ef- forts between federal and state agencies or advisory councils or both. The proposed structures might in many respects be a model for the sort

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312 EMERGENCY MEDICAL SERVICES FOR CHILDREN of federal-state partnership that may prove increasingly desirable in health policy in the future. Given the serious fiscal constraints of the federal government and a majority of the states, future intergovernmental initiatives in health policy are unlikely to be successful if they require substantial amounts of new funding. Various recent federal mandates, including many in health care and public health regulation, have generated requirements for additional Bale spending with little or no federal funding support, leaving states increasingly cynical toward new initiatives from Washington (Conlan, 1991; Zimmerman, 19911. As a result, any EMS-C policy strategies that call for major new state expenditures or impose significant new federal oversight are virtually certain to meet state and local government resis- tance and face considerable implementation problems. By contrast, the proposed federal center, plus state lead agencies, are intended to stimulate rather than impose requirements for state actions. This approach recognizes the extraordinary diversity in state capacity to fund effective EMS-C programs as well as the tremendous interstate varia- tion in the challenges that EMS-C providers face. Rather than attempt to compress these different states and situations into a uniform national model for EMS-C, the idea is to give new prominence and visibility to the issue at both the national and state levels while permitting each state to explore its own unique circumstances and opportunities for improvement. In fact, a growing body of literature on intergovernmental relations emphasizes the limitations of federal policy interventions that involve rigor- ous federal "command and control" over state actions (Conlan, 1988; Anton, 1989~. More coercive interventions may be warranted in those situations where a need for a uniform federal standard exists and its implementation is feasible. Construction of interstate highways is a case in point, as are eligibility standards for Social Security and Supplemental Security Income, Medicare reimbursement practices, and standards for federal MCH block grants. All of these programs, however, run a risk of fostering intergovern- mental conflict and developing a preoccupation with procedural compliance rather than creative problem-solving; more innovative partnerships may be more desirable and more effective (Wilson, 1989; Osborne and Gaebler, 1992~.~6 In some ways, the committee proposals may be in the tradition of past federal health policy efforts under the Hospital Survey and Construction Act of 1946 (the Hill-Burton Act), which is seen as a unique model of intergov- ernmental problem-solving and relative ease of implementation (Peterson et al., 1986~. The primary purpose of the Hill-Burton Act was to fund hospital construction and expansion, but it also provided each state with a small amount of funding to develop planning groups that could examine state hospital needs and develop statewide priorities for allocating subsequent Hill-Burton dollars. This approach recognized the enormous interstate variation

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LEADERSHIP FOR DEVELOPING EMS-C 313 in hospital capacity and need, and it enabled each state to tailor plans with minimal federal direction. Improving organizational efficiency. Yet another political argument is one of efficiency in government. All states, whether in fiscal turmoil or not, can benefit from streamlined, nonduplicative bureaucracies and agen- c~e~s, less interagency conflict over tud, clearer policy directives and author- ity, and better communication with and accountability to the public. The committee's view is that appropriately constituted and supported agencies, especially at the state level, can address jurisdictional problems and foster more efficient planning, oversight, and operations of EMS and EMS-C pro- grams, at least those parts of such programs that relate to the public sector or are affected by governmental policies and funds. Improving economic efficiency and countering economic losses. An economic argument can be made to the effect that promoting the delivery of high quality emergency care to children can reduce both the direct and the indirect costs associated with adverse outcomes from inadequate care. For example, if an injured child receives no care or inadequate care, the years of life and labor lost are much greater than what would be calculated for an adult. Arguably, the psychic costs for the child and his or her family are greater as well. Furthermore, additional direct economic costs may be in- curred in rectifying the problems that timely and appropriate care could have forestalled. Thus, these agencies and advisory councils can help en- sure that services relating to prevention of injury and illness, disability prevention, and rehabilitation for children are included in the state EMS plan and are linked to more general planning for child health needs. More broadly, they can work to guarantee that these and related emergency ser- vices are universally available to all children residing in the state. FINANCING CENTERS, AGENCIES, AND RELATED ACTIVITIES Proposing new programs and new organizational entities, no matter how worthy, is irresponsible if not accompanied by some examination of the cost implications. This is especially true when the programs and agen- cies are in the public sector and when fiscal constraints on the public trea- sury are as severe as they are in this nation today. It is: even more critical when the mandates come from the federal level and the funding must be found at the state, county, or municipal level. This committee did not attempt to develop a thorough cost-benefit or cost-effectiveness analysis of its recommendations doing so would have been beyond its charge and, as discussed above, would not have been as full as possible owing to the significant lack of appropriate, reliable, valid, or generalizable cost data. The committee did, however, develop some rough

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314 EMERGENCY MEDICAL SERVICES FOR CHILDREN estimates of levels offederal expenditures that would be needed to start and sustain these efforts in the short run. It offers one specific funding recom- mendation in this chapter, and returns to costs and benefits issues in the final chapter. The committee advocates congressional appropriations of new federal monies for each of the ensuing five years for federal and federally sup: ported activities related to emergency care for children. Part of this funding would directly support federal center efforts; most of the funds would be made available to support state agency programs (and perhaps, through the states, some local activities). Specifically, the committee recommends that Congress appropriate $30 million each year for five years a total of $150 million over the period- to support activities of the federal center and the state agencies related to emergency medical services for children. The five-year time frame is essentially arbitrary, and the committee has not made allowances for inflation. The total of $30 million per year might be allocated as follows, al- though these figures are purely illustratively $1.5 million for direct opera- tion of the federal center in DHHS (including staff costs, travel for advisory council members and staff, and similar expenditures); $1 million for data collection, analysis, and minimum data set activities, and $1.5 million for technical assistance and clearinghouse tasks. An additional $2.5 million might be allocated for research, which the committee explicitly assumes will be awarded for extramural research; the committee takes no stance, however, on whether the national advisory council should have review and approval authority over such contracts or grants. The remaining $23.5 million (that is, about three-quarters of the total annual appropriation) might be allocated to the 54 "states" on the basis of a two-part formula one part representing fixed costs and the other represent- ing variable amounts based on population. The latter, for instance, might be a function of the absolute number of children in the state (e.g., persons age O to 17 years) or a function of children as a proportion of the entire state population. Thus, for each entity, an annual grant of $250,000 for fixed operational costs might be supplemented with population-based grants from $50,000 to $500,000 per year. States and localities (e.g., counties, metro- politan areas), as well as organizations in the private sector, would be eli- gible to apply for federal funds for research, technical assistance, clearing- house activities, and similar functions financed directly through the national center. State agencies could establish policies for making some portion of their own federal dollars available to local communities or in-state private sector entities (in addition to whatever state funds such agencies might have at their command for these purposes). This committee cautions that the recommended level of support is the

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LEADERSHIP FOR DEVELOPING EMS-C 315 absolute minimum for development of an effective program. A token, underfunded EMS-C program cannot discharge its responsibilities satisfactorily. Such an effort may thus waste the resources that are provided, lead to a false sense of security about the state of EMS for children today and tomorrow, and be unable to demonstrate any meaningful effect on the planning and delivery of emergency care for children. Barr- to this two-part, five-~ar strategy might be considered. For example, the EMS-C demonstration program in HRSA might be ex- panded. The committee welcomes the FY 1993-97 reauthorization as an interim, maintenance-of-effort step, but the panel also regards it, for long- term progress, as too awkward and indirect an approach. First, a federal grant program cannot easily accomplish many of the goals the committee wishes to see accomplished now at the federal government level. Second, continued reliance on simply a demonstration program (and one that is sparsely funded at that) risks undercutting the visibility the committee wishes to bring to the need to improve EMS-C throughout this country and delay- ing needed progress at all governmental levels. This committee clearly envisions a major expansion of EMS-C activi- ties in both the private and public sectors as a consequence of its full set of recommendations for education, communication, data, research, and the like. A significant number of such programs would involve start-up efforts, and many of these will be in states and locales facing drastic budget problems of their own. The committee does not view a sixfold increase in existing funding, under these circumstances, as inappropriate for giving the entire program the visibility and influence it needs from the outset. In its financing recommendations, the committee has specified a target amount for the sake of concreteness and face validity. It recognizes, how- ever, that detailed point estimates can be convenient targets for critics and budget-cutters. Moreover, implementation can be a rocky road, and some details and desirable (or not so desirable) aspects of this effort will emerge only as the program progresses. Thus, it concedes that the recommended dollar figures above might well be revised, either upward or downward, over the proposed five-year funding period. Part of the reason for advising that the federal center develop annual, public reports is to enforce account- ability for monies expended, to provide ammunition to counter critics, and to make the case, where it can be made, for increased levels of funding in the future. The committee also acknowledges that its recommendations may seem costly in the face of stringent budget constraints at the federal and state levels and the need for "pay-as-you-go" legislation at the federal level (pur- suant to the Deficit Reduction Act of 1990 [Omnibus Budget Reconciliation Act of 1990, P.L. 101-50831. It rejects, however, the notion that in absolute terms this level of spending is excessive to address the myriad needs of a

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316 EMERGENCY MEDICAL SERVICES FOR CHILDREN broad-based-program to expand and integrate EMS-C into a more compre- hensive EMS program for the country and to promote stronger~links' with broader child health concerns. ~,su~M~y To focus attention on efforts to ~mprove-EMS--C, the committee set forth in this chapter t.wo-pairs of recommendations regarding the establ'ish- ment of EMS-C entities at the federal and state levels (see Box 8-1~. Spe- cifically, the committee recommends: (1) that the U.S. Congress direct the Secretary of DHHS establish. a federal center or office, together with a national advisory council, to identify national concerns in EMS-C and.to coordinate federal efforts in this area, and (2) that the. states establish lead agencies, as well as related advisory councils,^. OCR for page 280
LEADERSHIP FOR DEVELOPING EMS-C 317 councils), efforts to ensure that children's emergency care needs are met will, at last, receive adequate attention. NOTES 1. As discussed in Chapter 7, ICD-9-CM E-codes refer to the set of "external cause-of- injury" codes that supplements the standard diagnostic codes of the International Classification of Diseases, ninth edition, clinical modification. 2. The Department of Defense (DOD) has been responsible for much research into acute emergency care and historically has trained many medics, corpsmen, and similar personnel. This training' is not identical to civilian EMS training, but it may well meet paramedic certifi- cation and licensing requirements in various states. Although DOD provides medical care, including emergency care, to children of service personnel, its principal focus in research and training is on care of active-duty personnel, particularly for combat casualties. The health care system of the ' Department of Veterans Affairs also delivers some EMS care but obviously does little if anything in' the pediatric 'EMS arena. 3. The committee considered at appreciable length various alternatives to the creation of a federal center or office for EMS-C. These included continuation of the demonstration grant program-essentially a status quo stance not favored by the committee or likely to be an acceptable option to key interested parties, such as those in Congress. Also debated at great length was creation of a federal or secretarial '`Task Force," which would fall quite short of a new center or office. This was rejected as insufficient to the tasks and responsibilities outlined

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318 EMERGENCY MEDICAL SERVICES FOR CHILDREN in this chapter for the proposed center, as likely to have many administrative and political drawbacks, and as likely to delay more effective federal action. 4. For purposes of the discussion Clout a federal center and state agencies, the committee assumes a total of 54 "state" entities namely, the 50 existing states, t7~;~ District of Columbia, Puerto Rico, the Virgin Islands, and a combined area of American Samoa, Guam, and the Commonwealth of the Marianas. It uses the term "state" for simplicity of presentation. 5. A -report toy the congressional Office of Technology Assessment (OTA, 1989) on needs in rural EMS identified five areas where federal leadership was needed: promoting training of providers; facilitating the development of national guidelines; providing technical assistance to states; supporting research; and providing incentives for state planning. The committee re- gards these areas as equally appropriate for EMS-C; many relate directly to the policy and program needs examined in Chapters 4 through 7. The committee's proposals also address other concerns: supporting national data collection and analysis, with attention to a uniform data set, conducting research, and disseminating research findings are cases in point. 6. In addition to elderly adults, Medicare regulations apply to children with end-stage renal disease (IOM, 1991c). 7. With respect to funding EMS-C efforts, the committee takes no stance concerning formal block or formula grant specifications enacted into law. It notes several problems with that approach, however. First, if the legislation is not crystal clear, the process of developing implementing regulations (which would require approval by the Office of Management and Budget) or even formal guidance could be difficult and drawn out. Second, it is not a given that such statutory language, regulations, or guidance could be made sufficiently flexible that the EMS-C office could respond adequately to the quite varied circumstances of pediatric emergency care across the states. That factor could thus inhibit the agency's ability to foster the variety of different programs and activities that might be desirable in these locales. 8. Weissert (1992) examines the potential (and now real) effects of federal (chiefly con- gressional) mandates to states in the absence of federal resources adequate to meet those mandates. This committee is sensitive to the fiscal problems now facing many states, particu- larly those in financial distress and those needing to upgrade their Medicaid programs substan- tially. It therefore calls for federally mandated requirements on the states in the area of EMS and EMS-C to be issued only when they can be accompanied by appropriate levels of federal support. 9. Various models of a federal EMS-C center could be considered. The most direct is one that operates as a government agency and is located, bureaucratically, within an existing agency; the committee recommends this option, chiefly for its appeal in coordinating disparate federal efforts and the clear accountability that can be maintained for the disbursement and use of federal monies. A variant is to site the agency somewhere outside the government itself, as in a university setting. Another option might parallel the "national laboratory" model, where the government establishes and owns the facilities but contracts with an entity in the private sector to run it; in this instance, the government can exercise a fair amount of control depend- ing upon how stringently the contracts are written and enforced. A third possibility is the grant model, in which an existing agency might simply award a long-term grant to a private sector group such as a university; here the authority of the government to direct activities will be weaker than through a contract mechanism. 10. The authority for making grants and contracts to the states (for "development of more effective education, training, research, prevention, diversion, treatment, and rehabilitation pro- grams in the area of juvenile delinquency and programs to improve the juvenile justice sys- tem") is spelled out in considerable detail in amendments to the original legislation for the OJJDP (U.S. House of Representatives, 1990, p. 10). Of interest, for example, is that funds are allocated annually among states on the basis of population under 18 years of age, minimum amounts for every state, and requirements for three-year state plans and annual performance reports.

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LEADERSHIP FOR DEVELOPING EMS-C 319 11. The committee is cognizant of the fact that federal advisory groups might be constructed under several different rubrics and in several different ways. For instance, it might be called a task force, a secretarial work group, a federal coordinating committee, or a national advisory council (as this committee has done), or any number of other designations. In federal adminis- trative terms, these have different connotations and, in theory at least, different memberships and levels of authority. Some may have private sector voting members and federal govern- ment nonvoting members, again as this committee has proposed. Others may be only inters agency task forces with advisors and consultants from the private sector; yet others may be constructed so as to involve both the public and private sectors in equivalently responsible roles. Furthermore, some arrangements may be only advisory, with no implementation author- ity or public accountability; others may have more far-reaching powers, such as the responsi- bility to approve research grants above a certain dollar level. 12. For the discussion of lead EMS-C agencies at the state level, "state agency" refers specifically to the recommended "lead agency" in each state's executive branch; to avoid confusion, other elements of state government are designated as departments, offices, units, or by some other rubric. 13. Significant impediments to progress toward computer-based patient records are often encountered at the state level, through archaic requirements for maintaining paper records, having physician signatures in ink, and similar conditions (IOM, 1991a). Obviously, expecting a state EMS-C agency to take the lead in overcoming such obstacles is not realistic, but such an agency can support appropriate change in state statutes and regulations that would permit inpatient and outpatient settings and offices to move more expeditiously toward computerized systems. it might be able to take an even more daring position concerning computer-based record keeping for prehospital providers. Assistance might be available from the Computer- based Patient Record Institute, established at the recommendation of an IOM committee (IOM, 1991a), which as of 1993 was temporarily housed in the Chicago offices of the American Health Information Management Association. 14. Although attention to children has increased in some communities, EMS systems, and training programs, pediatric concerns remain a low priority for others. East Tennessee Children's Hospital, for example, resorted to suing the state of Tennessee to get children included in the state trauma plan. More recently, early drafts of the National Trauma Plan mandated by the Trauma Care Systems Planning and Development Act of 1990 (P.L. 101-590) omitted refer- ence to existing pediatric standards and the specific needs of children despite explicit legisla- tive language requiring their consideration; following public and professional review and com- ment, later drafts corrected the oversight. 15. In other health policy spheres, the argument that the pendulum must swing back toward children is already having some impact. Recently, general expansion of Medicaid programs through the Omnibus Budget Reconciliation Acts of 1989 and 1990 (P.L. 101-239 and P.L. 101-508, respectively) has been targeted at women and children. For example, these statutes have mandated complete state coverage of pregnant women and children up to 6 years of age who are in families with incomes below 133 percent of the federal poverty level, with subse- quent coverage phased in, one year at a time, for all children through 18 years of age with family incomes less than 100 percent of poverty (Lee, 1992; Weissert, 1992). Some health care reform proposals appear to be predicated on the need to address access problems that affect disadvantaged populations, which clearly include intolerably high numbers of children (NRC/TOM, 1992a). 16. Several IOM reports touch on these questions of federal-state-local relationships. The landmark report, The Future of Public Health (IOM, 1988), delineated coordinated levels of responsibility for public health activities at the federal, state, and local levels namely, "as- sessment, policy development, and assurance" (pp. 7-8); it went on to specify functions and responsibilities unique to communities, states, and the federal government in some detail. The mission of public health introduced in that report- "fulfilling society's interest in assuring

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320 EMERGEN'C'Y 'MEDICAL SERVICES FOR CHILDREN conditions in which people can be healthy" (p. 7) is' vie with which the present committee's 'focus on EMS-C is quite congruent. This consistency with the earlier, broader report lends additional credibility to the committee's recommendations that there be leadership from the federal government but considerable operational action by states and localities: A more recent monograph on prevention of disability (IOM, l991b) makes the point that meeting~the challenges of disability and prevention calls for federal, state, and local responsi- bility: "GQ~ernmen~t involvement at all three levels is a necessary condition for progress" (p. 2613. Tt calls on the federal level "to provide leadership, financial support and technical resources totstates~ and localities" (p. 262) and for states and communities to act "on their own" as well.' This'report goes on to argue that "input and contributions from the private sector" (p. 263), such as businesses and other private organizations and associations, also will be neces- sary, further''underscoring the need for effective links to be forged between the public and private sectors in addition to those developed across all levels of government. Even a program 'such as Medicare can gain from approaches that extend beyond simple federal administration. In a detailed examination of approaches for ensuring the quality of health care delivered to the elderly (IOM, 1990b), yet another IOM 'committee laid out a strategy that involved considerable collaboration between a federal agency (HCFA), state- based (but private) Peer Review Organizations, and''iocal'provider organizations (hospitals', physician offices, health maintenance organizations, and the like). 17. For comparison purposes, the following figures for the main (non-Medicaid) federal program for children might be considered. For the RICH block grant program to the states, which is administered by MCHB/HRSA, approximately $547 million was available in FY 1992 for direct block grants, approximately $96 million for SPRAINS grants (Special Playacts of Regional and National Significance), and about $11 million for program operations at the federal and regional office level, for a total of about $654 million. Operations thus constitute about 1'.7 percent of the total. The proposed level of funding for EMS-C (i.e., $30 million annually), much of which would 'tee a pass-throu'~h to states or would support special projects and activities, represents the equivalent of about 4.6 percent of the MCH block grant effort. Figures from the HRSA EMS-C demonstration grant program also provide a useful context. For example, start-up funds for the initial four projects were approximately $500,000 each ($2 million annually in the early years of the program); more recently, annual aIl'ocations for two resource centers totaled approximately $650,000. Appropriations in FY 1'99;1 were $5 million for about 22 different projects. In Octobe'r 1992, the EMS-C~program was reauthorized until 1997 (P.L. 102-410) "for such sums as may be necessary' for each of the fiscal years 1993 through 1997"; funding had been $5 million ' for each of FY 1991 and 1992. This bridging authorization is basically a means of ensuring some continuity in the EMS-C effort until action can be taken on the IOM committee's recommendations.