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Emergency Medical Services for Children (1993)

Chapter: 8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN

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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Page 308
Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Page 313
Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Page 314
Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Page 315
Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Suggested Citation:"8 LEADERSHIP FOR DEVELOPING EMERGENCY MEDICAL SERVICES FOR CHILDREN." Institute of Medicine. 1993. Emergency Medical Services for Children. Washington, DC: The National Academies Press. doi: 10.17226/2137.
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Below is the uncorrected machine-read text of this chapter, intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text of each book. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

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

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

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

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,

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

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.

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.

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

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

. 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.

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

LEADERSHIP FOR DEVELOPING EMS-C 291 research in the area of EMS and EMS-C. The center should consider both short- and long-term concerns, and it should aim to improve the knowledge base regarding the effectiveness of EMS-C programs. Because costs and financing rank among the very troublesome questions for EMS and EMS-C, the center should devote considerable research resources to refining meth- ods for estimating benefits and effectiveness and to documenting costs, SO that the cost-effectiveness of EMS-C can be better understood. Other topics (such as the need for better severity-of-illness and -injury indices, and oth- ers discussed in Chapter 7) should also be targeted for early investigation. The center should be charged, however, to coordinate its research program with related efforts in other federal agencies, particularly those in DHHS and NHTSA, to reduce the risk of duplication of effort and to enhance the opportunities for leveraging scarce resource dollars across agencies and projects. The earlier research program in trauma and emergency cardiac care for adults administered by the National Center for Health Services Research (the predecessor to AHCPR) may offer some useful direction for EMS-C research. Creating Incentives for State Action Because the federal government has only limited responsibilities for the direct operation of EMS systems, its efforts to improve their services must operate through states and localities and the various health care providers who do deliver those services. States are an especially important target because of their frequent role as funders of EMS and as regulators through standards for provider training and practice, facilities, and equipment. The federal EMS-C center should, therefore, assess mechanisms that could be used to encourage state action on EMS-C. Funding programs (such as block or formula grants) are frequently used to promote specific goals. They can achieve their desired effect by provid- ing additional resources and by prompting states to take actions required to qualify for funding. If the legislation called for in this chapter to establish the center and to appropriate funds-does not specify criteria for state block or formula grants, then the center would need to develop criteria by which states would be eligible for grant or other support, and it would need to issue some form of guidance to the states.7 Those criteria would certainly need to be clear about the kinds of ac- tivities training, supporting additional staff, purchasing new equipment, for example-that would be supported. The center might want to require the states to develop a formal plan for addressing EMS-C needs before federal funds are released, and it might also require them to submit an annual report indicating how those funds have been spent and how well the goals of the state plan have been met. Making some funding available on

292 EMERGENCY MEDICAL SERVICES FOR CHILDREN the basis of a "formula" (size and other demographic characteristics of a population, for example) may be appropriate to help ensure that all states are eligible for at least some support. Serious consideration should be given to the impact of funding mecha- nisms. Matching-fund programs, for example, may discourage participation by states with severe shortages of state funds; maintenance of "level of effort'' (e.g., that a certain level of state expenditure in one year becomes the base for ensuing years) also may be a significant barrier for states in serious fiscal disarray. Nevertheless, even with these disadvantages match- ing-fund programs can be extremely important politically and can contrib- ute significantly to the perception, and the reality, of continuity of effort. Thus, a significant issue for the federal center (and its advisory council) will lie in devising funding strategies that will be attractive to states and feasible for them to manage.8 Apart from direct "grants," the EMS-C center should also seek to iden- tify other mechanisms that could create incentives for states to give atten- tion to EMS-C needs. These might involve different kinds of financial incentives (for research, training, highway funds, or the like), user liaison and outreach programs, and information exchange. For example, the center might undertake to increase access to training or to help finance purchases of additional equipment. Providing Technical Assistance States and localities may not have available the kinds of expertise they need either to assess shortcomings in their ability to provide emergency care for children or to develop the new programs that would improve their capabilities. A technical assistance program at the federal level could help make the necessary expertise available. That assistance might take various forms, including model legislation, periodic workshops conducted at the local level, or special expert panels assembled to give advice on especially difficult problems. Other areas include specific pediatric training and strat- egies for retraining, pediatric hospital classification and destination guide- lines, pediatric triage protocols, and pediatric quality assurance criteria. Early in its existence, the federal EMS-C center should identify high priority areas, such as data collection and analysis, where technical assis- tance would be especially valuable. Federal employees, outside experts acting as consultants to the center, and subcontractors might all be used in this technical assistance role. NHTSA's program for state EMS assessments illustrates the kind of services that can be provided (NHTSA, l991b). When a state requests an assessment, NHTSA assembles a team of experts and serves as a facilitator for the review. The members of the team are picked to ensure standing and

LEADERSHIP FOR DEVELOPING EMS-C 293 proficiency in areas of specific concern to the state (e.g., rural EMS sys- tems, legislative proposals, or data systems). Assessments are made in 10 areas on the basis of standards developed by NHTSA: regulation and policy, resource management, human resources and training, transportation, com- munications, facilities, public information and education, medical direction, trauma systems, and evaluation. The judgments and recommendations of the assessment teams also take into account the unique features of a state. Promoting interstate Coordination Because population and health care resources are not distributed evenly across the country, some states (or parts of states) must rely on the emer- gency care resources of neighboring states, particularly specialized pediat- ric referral centers, to provide the care that their populations need. States also may have common regional concerns but lack the resources or the motivation to develop cooperative responses. The EMS-C center should develop ways in which federal activities can promote interstate coordination, which may well include addressing prob- lems of both sparsely populated rural areas and urban metropolises. In so doing, it should determine whether federal regulations or program require- ments create impediments to regional coordination and how those impedi- ments can be reduced. Finally, it might investigate whether future federal efforts could facilitate interstate reimbursements under Medicaid or other programs, particularly in the context of state agency efforts to develop writ- ten transfer agreements and other interstate cooperative initiatives. A special form of coordination to which the federal center ought to direct some attention is international, especially relationships between states of the United States and neighboring countries. Sixteen states share borders with Canada or Mexico; Alaska also has as a neighbor the former Soviet Union. In particular, cooperation and collaboration for states bordering on Canada and Mexico will be especially important in addressing the full range of issues and services embodied in this committee's view of EMS-C. The expected implementation of the North American Free Trade Agreement for Canada, Mexico, and the United States, which may attract new industries and new populations to the border regions, will add a challenge to the efforts of the border states to expand their EMS-C programs. Models for a Federal EMS-C Center Described below are several models that Congress and the Secretary of DHHS could consider in drawing up plans for a federal EMS-C center. This committee has recommended a fairly traditional federal agency arrange- ment, coupled with a national advisory council, but it notes that a hybrid

294 EMERGENCY MEDICAL SERVICES FOR CHILDREN approach to organizational structure and governance might be considered. For example, the federal center would carry out tasks appropriate to na- tional policy and serve as the publicly accountable agent for federal monies to pass to states, localities, and the private sector; one or more "national centers" or "technical" or "resource" centers might be established outside government to discharge specific responsibilities such as technical assis- tance and information clearinghouse functions.9 In selecting these models, the committee has focused on the structure and activities of each, not any specific placement within the parent agency. Existing DHHS Offices At least two units located in the Office of the Assistant Secretary for Health, DHHS, might be regarded as prototypes for the type of agency contemplated by this committee, because they carry out the kinds of activi- ties envisioned for the federal EMS-C center. One is the Office of Disease Prevention and Health Promotion (ODPHP); the other is the Office of Mi- nority Health (OMH). ODPHP was established in 1976 to coordinate DHHS policies and pro- grams in the health promotion arena, and it has considerable responsibility within the PHS to implement various health promotion and disease preven- tion strategies (such as those advanced in Healthy People 2000 [DHHS, 19911~. ODPHP is charged to foster the development and adoption of pre- vention efforts among many groups outside the federal government both in state and local governments as well as many different organizations in the private sector. It supports staff involvement in a wide array of issues relating to prevention and conducts a number of cross-cutting programs (e.g., development of clinical practice guidelines in the prevention area; operation of a national health information center) on a budget that in FY 1988 was just over $4.4 million (DHHS, 19901. OMH is a newer agency (created in 1985) to oversee implementation of the recommendations of a secretarial task force on black and minority health (DHHS, 1990; IHPP, 1990~. Activities targeted on prevention (budgeted in FY 1988 at just under $8 million) include operation of a resource center for information on minority health issues infant mortality; cancer; heart dis- ease and stroke; cirrhosis caused by alcohol dependency; diabetes; homi- cide, suicide, and accidental injuries; and acquired immune deficiency syn- drome. OMH has created a computerized database of materials, organizations, and programs pertinent to these issues. In addition, OMH administers a grants program to support community coalitions that will plan and imple- ment innovative local efforts to reduce risk factors for disease among blacks, Hispanics/Latinos, Asians, Pacific Islanders, and Native Americans. It also underwrites the efforts of community-based and national minority organiza

LEADERSHIP FOR DEVELOPING EMS-C 295 lions to provide education and information concerning prevention of the transmission of the human immunodeficiency virus. As of late 1990, sev- eral states had followed the federal lead and established offices or similar bodies to address minority health problems (IHPP, 1990~. Cheaters on Pediatric Emergency Care Some elements of other programs more directly associated with EMS-C might also serve as models for a national center. The two examples noted here are part of the EMS-C Resource Network, although based in the pri- vate sector, both are funded by MCHB in HRSA. The EMS-C National Resource Center (NRC) at Children's National Medical Center in Washington, D.C., provides extensive consultation and technical assistance to state EMS-C projects or coalitions in a variety of areas: building successful coalitions, tracking legislation and forming pub- lic policy, and identifying long-term funding sources. Newly funded projects are assisted in initiating start-up activities, improving communication skills, and developing action plans. The EMS-C NRC provides guidelines for networking with community voluntary organizations that have a child advo- cacy focus, and it disseminates information about foundation, corporate, and federal funding sources. It also tracks and analyzes state and federal legislation and policy issues with a pediatric or an EMS focus, and it dissemi- nates guidelines for educating the public about those policy issues. The National EMS-C Resource Alliance (NERA), located at Harbor- UCLA Medical Center in Torrance, California, aims to improve EMS-C capabilities in existing EMS systems with the assistance of a network of experts who can serve as consultants on a variety of EMS-C matters. Its services include on-site and telephone consultation about child advocacy, minority issues, access for children with special needs, pediatric trauma, injury prevention, and other EMS-C topics; advice on data collection (in- cluding a uniform national EMS-C data base) and access, at low cost, to certain types of computer software programs developed by EMS-C projects; information about educational curricula, videotapes, quick reference drug and equipment charts, and equipment guidelines; and regional conference and workshops aimed at integrating primary care pediatricians, family phy- sicians, and other providers into EMS activities. In addition, NERA pub- lishes a quarterly newsletter (EMSC News). Centers on Child Abuse and Neglect One prototype for a national center might be the C. Henry Kempe National Center for the Prevention and Treatment of Child Abuse and Ne- glect, which is based at the University of Colorado Health Sciences Center

296 EMERGENCY MEDICAL SERVICES FOR CHILDREN in Denver. An outgrowth of the Child Protection Team at the Health Sci- ences Center and in formal operation since 1972, the Kempe Center pro- vides a wide array of education and training courses and materials, renders clinical services for individuals and families, and conducts research in the areas of child abuse and neglect, protective services, preventive interven- t~ns' and related policy concerns. Although its clinical services are con- centrated in the Denver area, the Kempe Center serves as a national re- source on clinical issues "by providing training and consultation on a fee-for-service basis and through networking and streamlining resources and referrals" (Krugman, no date, p. 4~. Its activities include operating a clinically-oriented resource library. NCCAN is an example of a national center within an existing federal agency (namely, the Administration on Children, Youth, and Families in DHHS). NCCAN, which has been in operation for nearly 20 years, conducts a vari- ety of legislatively mandated and discretionary activities that are much like those that the committee believes are needed in EMS-C (U.S. Advisory Board, 19911: coordinating federal programs through an interagency task force; conducting research (including data collection and analysis) and making research grants; awarding grants to states and localities to develop or en- hance services; providing technical assistance; and supporting the operation of an information clearinghouse (at the Kempe Center, noted above tClear- inghouse, 19921~. Recently, NCCAN has been criticized for relative lack of impact and deficiencies in its research and demonstration efforts, which the evaluators attributed in part to unrealistic expectations on the part of Con- gress and inadequate budget and staff (U.S. Advisory Board, 1991~. Other Executive Branch Models The Office of Juvenile Justice and Delinquency Prevention in the Of- fice of Justice Programs of the Department of Justice might be yet another model (U.S. House of Representatives, 1990; OJJDP, no date). It comprises divisions targeted on (1) research and development; (2) training and techni- cal assistance to federal, state, and local governments, private agencies, and professionals in the juvenile justice system; (3) programs of special empha- sis (e.g., reducing illegal drug use by high-risk youth); (4) state relations and assistance, which provides formula grant funds and technical assistance to states in areas such as separation of juveniles and adults in jails and implementation of comprehensive state plans; (5) information dissemination and other clearinghouse activities; (6) missing children; and (7) concentra- tion of federal efforts. For FY 1993, appropriations for these various efforts totaled about $73.5 million, of which two-thirds constituted formula grants to the states.~° The Coordinating Council on Juvenile Justice and Delin- quency Prevention, an independent organization in the executive branch,

LEADERSHIP FOR DEVELOPING EMS-C 297 plays a key role. Operating under a mandate from Congress, this council comprises (among others) the secretaries of several cabinet-level depart- ments, directors of several other independent agencies, and nine public members expert in the field of juvenile justice. It meets quarterly and makes recom- mendations annually to the President and Congress concerning coordination of policies and programs in this area and success in meeting program o-bjec- t~ves and priorities. Although clearly the interests and purview of OJJDP and the Coordinating Council are much different from those envisioned for the federal EMS-C center and its advisory council (discussed below), their operational structures and organizational influence may bear important les- sons for the program this committee is advocating. A National Advisory Council As proposed by the committee, the Secretary of DHHS should appoint a national advisory council for the federal EMS-C center. This action serves two purposes. First, as has been noted, it adds to the visibility and credibility of the federal effort. Second, it helps ensure broad communication and inter- action among all parties with an interest in EMS-C, EMS, and child health. Structure and Membership Although DHHS should determine the membership of the national advi- sory council (unless legislation has specified the expertise and constituen- cies to be represented), the committee advises that it reflect a wide set of interests and areas of expertise. These experts should be able to address operational and clinical concerns for illness and injury, but the general point is that the council must have broader EMS and child health perspectives in order to further the aim of integrating EMS-C better into these two fields. Private Sector Membership Voting members should include represen- tatives across a broad spectrum of health care providers. Among these at a minimum should be providers of prehospital care; pediatricians and other primary care providers for children; physicians in specialties such as emer- gency medicine and other fields appropriate to a full range of services from prevention and primary care, through definitive treatment of serious illness and injury, to rehabilitation; and nurses, including emergency and critical care nurses. The hospital and insurance communities should be represented as well. Similarly, voting members should include representatives of the public, par- ticularly consumer and child advocacy groups, and perhaps from the busi- ness community. Finally, membership should involve experts in health policy issues, such as those versed in health economics, health services research, health law, and related disciplines.

298 EMERGENCY MEDICO SERVICES FOR CHILDREN Public Sector Representation Representatives of state and local gov- ernment (both executive and legislative branches) should be included as voting members. Nonvoting members should include representatives of federal agencies with major responsibilities in emergency medical care and child health and possibly other federal agencies with significant but less direct interests ~n these issues. Many of throne agencies discussed above In connection with coordination of federal efforts would be represented. Alto- gether, the number of federal agencies with a potential interest in the activi- ties of this proposed EMS-C agency is large. In addition to representatives of government agencies, activists should not lose sight of the value of organizations that may bridge a gap between federal and state interests or across state lines. Groups that might sensibly be involved from the outset include the National League of Cities, the U.S. Conference of Mayors, the National Association of Counties, the Council of State Governments, the National Conference of State Legislatures, the Na- tional Governors' Association, the U.S. Conference of Local Health Offi- cers, the National Association of County Health Officers, the Association of State and Territorial Health Officers, as well as the U.S. Advisory Commis- sion on Intergovernmental Relations. Length of Service The committee advises that members of the advi- sory council for the EMS-C center serve for a fixed period, such as two or three years. The committee also advises that terms be set in a staggered fashion, so that no more than one-third to one-half of the advisory council is "new" in any one period. Staffing and Reporting Given its charge, a national advisory council for the EMS-C center should require only minimal administrative support from DHHS; it is assumed that this support will come from the center itself. The committee also believes that the advisory council should be charged with issuing periodic reports to the Secretary, preferably annually. Those reports should be widely disseminated to, among others, Congress, involved executive branch agencies, the states and their EMS-C advisory councils, and other interested parties. They should present recommendations of the advisory council concerning the main goals of the EMS-C center as well as any advice it has concerning programs or activities to be initiated, carried on, expanded, modified, or ended. STATE AGENCIES AND ADVISORY COUNCILS ON EMERGENCY MEDICAL SERVICES FOR CHILDREN The committee's second major pair of recommendations in this chapter is that each state establish a lead agency for EMS-C and a corresponding advisory council. The committee takes no position on whether these should

LEADERSHIP FOR DEVELOPING EMS-C 299 be created by the governors or by state legislatures and assemblies, recog- nizing that the states differ widely in their constitutional and political struc- tures (Rosenthal, 19901. For simplicity, the discussion is mainly in terms of gubernatorial action, because at some point the agency (and its council) will need to be supported as an executive branch entity. The mission is to build an effort that can creatively pursue two major goals: {Q bring EMS-C issues to the attention of a broad audience in state, county, and local gov- ernments and in the health care community, and to have children's emer- gency health care needs incorporated into standards setting, system plan . . mug, ant ~ program operation. State Agency Structure These lead EMS-C agencies in the states are, in the committee's view, likely to have a much more direct impact on the organization and delivery of services to patients within each state's borders than the federal EMS-C agency can hope to have. Each state will have a unique mix of opportuni- ties and constraints based on factors such as population, geography, cul- ture, political system, economics, and health care policies and resources and each state agency must formulate programs suited to its specific circumstances. Thus, although the committee believes that lead agencies for the states are key to integrating EMS-C into EMS and in improving the outcomes of EMS-C, it does not present a single model for them. Each state will need to determine, based on its specific organizational patterns and requirements, an EMS-C agency's appropriate administrative base. The critical requirements are that the lead agency clearly have the principal authority for EMS-C matters and that it operate at a high enough level to ensure that it can be effective with all the groups it needs to reach. Several models for development and integration of EMS-C activities within state programs presently exist. New Jersey, through legislation, has established a program for EMS-C within the EMS agency. Other states (e.g., California, Idaho, and Maryland) have used the state EMS agency as the lead agency for EMS-C. These states have integrated ongoing EMS-C activities into the respective agencies and have specific advisory boards or committees for those agencies. In states with programs such as these, re- sponsible officials may want to apply the IOM recommendations simply to ensure that the agency is appropriately placed and able to discharge its obligations effectively. In states where this is not the case, the governor should make such designation of a lead agency a matter of high priority. When an implicit designation of responsibility exists, the governor should make the agency and other interested parties fully aware of that assignment and make the designation explicit and public.

300 EMERGENCY MEDICAL SERVICES FOR CHILDREN In some states where no obvious locus of responsibility for EMS-C can be found, the problem may be that departments disagree on where EMS-C responsibilities should lie- with an EMS bureau or an MCH office, for example or that responsibilities are fragmented (inadvertently or other- wise) across units of the state government. In some states, the real heart of EMS may lie in regional' county or local programs. In situations of this son, the governor mar kind it convenient to appoint an advisory council first and seek its advice as to where best to locate an EMS-C lead agency, and perhaps even obtain its help in "negotiating" with the contending agen- cies to reach an agreement. State Agency Charge and Agenda The committee sees at least eight areas on which a state EMS-C agency ought to place high priority: 1. planning state programs; enhancing education and training; 3. strengthening structural elements of the EMS-C system; 4. collecting and analyzing data; 5. improving access to care; 6. broadening interstate cooperation; 7. ensuring public accountability; and, 8. in terms of implementation broadly conceived, taking political con- siderations and fiscal constraints into account. Planning State Programs The committee believes that initial high priority should be given to the development of a comprehensive state plan for advancing EMS-C programs and integrating them within the existing EMS systems of the state. This will be crucial for the state to be able to compete successfully for federal funds or to use productively the formula or block grant monies to which it may be entitled. In producing this plan, the agency must actively communicate with all sister units in the state government those involved in EMS, in health care generally and child health in particular, in traffic safety, in law enforcement, and so forth. It must also reach out to government departments at the county and municipal levels. Finally, it must look beyond the public sector to those parties in the nonprofit and private sectors the health care profes- sions, child and public advocacy groups, and the like whose cooperation and support will be necessary to effective implementation of the state plan. In this regard, active participation of the advisory council will be vital.

LEADERSHIP FOR DEVELOPING EMS-C Enhancing Education and Training 301 Education in this nation is traditionally a state and local responsibility rather than a federal one. For the subject of this report, this remains a bedrock assumption. The states will and should have major obligations and duties in both public and professional education. The suggestions below, by no means exhaustive' are intended to illustrate the set of actions that ~ state EMS-C agency might take in the education arena, following the recommen- dations and discussion in Chapter 4. Public Education This committee has formally recommended that states and localities develop more extensive public education programs in preven- tion, first aid, cardiopulmonary resuscitation, and how and when to use the EMS systems. These programs need to be developed for a variety of groups: parents, teachers, day-care providers, coaches, recreation personnel, others with responsibility for children's activities, and children themselves. The state agency should address where responsibility should lie for developing those programs and for actually bringing them to the target audiences. Where appropriate, it should establish criteria for the curriculum of such programs, provide financial support, underwrite teacher training, and in various addi- tional ways take active steps to reach the relevant audiences and popula- tions. It may be a special duty of the state agency to address particular concerns of minority or otherwise hard-to-reach groups, such as those in remote rural areas. Professional Education This committee has also made a number of suggestions, and five formal recommendations, in Chapter 4 concerning professional education- new or augmented curricula in resuscitation skills in the early years of training, for example, and involvement of accreditation organizations in changing residency programs and establishing requirements for more advanced EMS curricula for certain health care professional groups. Although these recommendations are aimed chiefly at the professions, states may be able to help in several ways. For example, the lead EMS-C agen- cies can work with counterpart units in state departments of education to foster curriculum and other changes in publicly supported schools and uni- versities. They can also review relevant licensing, certification, and ac- creditation requirements in the state (which may involve elements of other state departments as well), and promote continuing education efforts for practitioners licensed or certified by the state. Finally, these EMS-C agen- cies might support high-technology communications programs that would permit volunteer EMS personnel or those in remote areas to participate in educational activities without disruption of local emergency care services or personal lives.

302 EMERGENCY MEDICAL SERVICES FOR CHILDREN Strengthening Structural Elements of the EMS-C System Medical Control Originally focused on physician oversight of prehospital advanced life support procedures, support exists for extending medical con- trol to all aspects of prehospital care (see Chapter 5~. In its "off-line" form, it is particularly vital in system planning, establishing training requirements, developing triage and treatment protocols, and evaluating quality of care. Real-time (or "on-line") guidance is also valuable, but it remains costly to provide and beyond the means of many EMS systems. State agencies should assess the adequacy of medical control for EMS operations in general and for EMS-C in particular. They should determine whether attention to the needs of pediatric patients in the existing medical control activities is sufficient and identify ways to improve the pediatric component where necessary. They should study both broad state-level prac- tices and medical control applied in local areas. For example, some com- munities may not have physicians with appropriate pediatric expertise who can provide the kind of oversight needed. The state agency should explore ways that the state itself, or the state's health care community, might pro- vide access to such services for both off-line and on-line guidance in such locales. Guidelines for EMS-C EMS-C requirements need to be addressed in all parts of a state's EMS systems, including training, equipment, system access (9-1-1 and enhanced 9-1-1 systems), dispatch protocols, triage and treatment protocols, transport procedures, and so on. The agencies should actively promote the development of appropriate EMS-C guidelines in all of these areas. The process should include determining the content of the guidelines and the providers to whom they will apply (e.g., whether first responders will have pediatric equipment requirements). Although the fo- cus may initially be on statewide guidelines, state agencies also should give attention to how those guidelines will be implemented at the local level and ways that the process can be enhanced. Collecting and Analyzing Data As discussed at length in Chapter 7, the committee believes that data collection and analysis programs are a vital component of the comprehen- sive development of EMS-C capabilities. Without adequate data, it is diffi- cult to know the true scale and nature of the demand for EMS-C services, how well those services are being provided, and whether better patient outcomes are being obtained. In the committee's view the state agencies should treat data collection and analysis capabilities as early and major priorities, much as it has advised that the federal center do.

LEADERSHIP FOR DEVELOPING EMS-C 303 States and localities need to be encouraged to develop systems for ob- taining data on EMS-C patients; on prehospital, ED, and inpatient services; and on the characteristics of providers delivering those services. Lead agencies should emphasize the need for adequate and continuing funding to maintain data collection and analysis and the benefit to be gained in the improved ability to plan services and allocate resources efficiently. They should establish the principle (if not the absolute requirement) that data ought to be consistent across a state (and, ideally, across the country) and support adoption of a national uniform EMS-C data set proposed in Chapter 7. They also should advocate prompt movement toward computerized data collection efforts, including computer-based patient records, to take advan- tage of the considerable efficiencies available through computer-based sys- tems.~3 Moreover, the state EMS-C agencies should ensure that plans are made for use of the data that are collected for research and analysis at the national, state, and local levels, because effective use will to a large degree determine the quality (reliability, validity, and completeness) of the data over time. Improving Access to Care Many structural and financial factors affect access to medical care. Children who are uninsured or whose care is provided through the Medicaid program face problems in obtaining care, and the physicians, clinics, and hospitals that do provide their care face financial burdens from insufficient reimbursement levels. The agencies should help identify barriers to care created by Medicaid and other payment schemes and explore opportunities that might exist for reducing those barriers. In this effort, the array of access indicators developed by the Institute of Medicine (IOM, 1993a), which will be adapted by the Robert Wood Johnson Foundation for its own projects, may be especially helpful. Broadening Interstate Cooperation Because of the particular distributions of population and medical facili- ties, in many places in the country patients who need specialized care must turn to hospitals in another state. In some areas, patients may even use hospitals in other states for more routine care. EMS agencies may also become involved in interstate operations. Where local facilities are lacking, they may need to arrange transport for patients to facilities in other states; alternatively, the emergency care providers may come from another state to provide services that are not available locally. Metropolitan areas spanning more than one state are yet another complex situation requiring consider- ation and cooperation; examples include Kansas City (Kansas and Mis

304 EMERGENCY MEDICAL SERVICES FOR CHILDREN sour)), Memphis (Tennessee, Arkansas, and Mississippi), the District of Colum- bia (itself, Maryland, and Virginia), and Philadelphia (Pennsylvania, Dela- ware, and perhaps New Jersey). The Utah- EMS-C project took on a similar challenge in fostering the development of a broad regional effort to develop uniform protocols and educational programs among the intermountain states of Utah. Welcoming.; Montana, and Nevada. Idaho' Oregon. Washington, and Colorado are also participating in at least some of the regional activities. Some states have been able to reach agreement on common standards for provider certification and authorized practices, but agreement on other issues such as Medicaid reimbursements or liability guidelines can often be more problematic. State agencies should try to determine the extent to which patients flow across their borders, either into or out of the state. Where movements of patients are substantial, they should try to identify the factors that underlie those movements and the problems that hinder inter- state cooperation. Clearly, individual state agencies will not be in a position to resolve all difficulties, but they should initiate a process aimed at resolving them. For example, state 13~MS-(: agencies working collaboratively might be able to foster transfer agreements among facilities across state lines and, as a part of that effort, make progress on uniform facility categorization with respect to tertiary pediatric care. They might also undertake development of re- gional communication systems and protocols for prehospital care and medi- cal control. The agencies and their-respective advisory councils should seek out any and all positive factors that can motivate states to seek greater interstate cooperation. Common regional interests and circumstances may make it useful for states to work together to develop programs, to share resources, and to learn from each other's past experiences, especially to the extent that federal mandates to states create fiscal or other problems that perhaps can best be addressed with some collective state action. Nevertheless, without institutional frameworks, sustaining or even initiating cooperative arrange- ments can be difficult, so representatives of the state agencies or their advi- sory councils must look diligently for opportunities for such cooperation and for mechanisms to sustain it. Working through national organizations concerned with state, county, and city matters, such as those noted earlier in this chapter, may be one effective tactic. Ensuring Public Accountability State agencies, or their advisory councils, must take visible responsibil- ity for their actions; they must be, and be seen to be, publicly accountable for the performance of the EMS system. The public should have a way to ensure that their investment in EMS-C is beneficial and used in an appropri

LEADERSHIP FOR DEVELOPING EMS-C 305 ate manner. Although the public might exercise that right more through an advisory council than directly with a state agency, the point is made here because the ultimate obligations for accountability rest with the public sec- tor agency. Apart from fiscal auditing procedures, a state agency might discharge its public accountability duties in. several ways Among the tasks that might be pursued are formal quality assurance for providers, rigorous program evaluation, citizen review panels for complaints, and review of training and continuing education materials and programs. Taking Political Considerations and Fiscal Constraints into Account Steps at the State Level Various approaches may be needed to bring about the kinds of changes required to provide adequate levels of care for seriously ill or injured children. State agencies should identify mechanisms most appropriate for their circumstances, depending on such factors as the political and economic climate, the flexibility and effectiveness of existing organizational arrangements, and the specific problems that demand the greatest attention. They can then formulate specific proposals with many environmental factors already taken into consideration. In some cases, legislative action may be appropriate to establish an official EMS-C component in the state's EMS program. New Jersey, in fact, passed such legislation in September 1992 (New Jersey P.L. 1992, c.96~. It establishes an EMS-C program in the state EMS office and creates an EMS-C advisory council; it also calls for the program to develop educa- tion and training for EMS personnel, an interhospital transfer system, pedi- atric rehabilitation units, and guidelines for triage, prehospital equipment, ED capabilities, pediatric intensive care units (PICUs), and pediatric trauma centers. The AAP (1992e, Appendix Q) has published the text of this legislation as a model that other states might follow. Legislation can also be targeted to specific problems, such as requiring use of bicycle helmets, motorcycle helmets, safety seats in automobiles, and protective gear for sports. Broader legislation involving consumer safety programs might call attention to issues concerning baby cribs, children's toys, medicines, clean- ing supplies, plumbing codes for water temperature regulation, and smoke detectors. Funding policies provide another tool that can be used to encourage adoption of desired practices. Medicaid reimbursement criteria could be revised to promote certain practices for example, to encourage use of of- fice-based physicians for routine pediatric care, to promote better prenatal care, or to coordinate care for children with chronic illness; they also could be modified to permit exceptions to certain reimbursement limitations (e.g.,

306 EMERGENCY MEDICAL SERVICES FOR CHILDREN those on hospital length of stay) in special circumstances. Similarly, such regulations might be used to discourage other practices for instance, to deny reimbursement for specific procedures performed at hospitals not meeting specific EMS-C qualifications. As a case in point, the MediCal (California Medicaid) program will not pay for pediatric critical care services in hospi- tals that do not have a PICU, and neonatal intensive care will not be rein bursed unless rendered in an appropriate facility. Relationships with "Local" Public Sector Entities Clearly, a concern of any state agency is how its work relates (or should relate) to activities at the county, district, and local levels. The particular distributions of statu- tory and regulatory authority, as well as historical (and unwritten) patterns, govern these relationships. One task before the lead agency will be to make creative and constructive use of those formal and informal controls to en- sure that EMS agencies, other public programs (such as law enforcement or traffic safety), and institutional and clinical health care providers find the motivation and mount the resources to develop better EMS-C capabilities. For example, in some states, programs that specifically finance additional training in EMS-C or equipment purchases may be required to enable smaller communities to make the needed changes. The committee's point is that reaching its ambitious goals for EMS-C at the state and local level may call for uncommon sensitivity, as well as bureaucratic agility, on the part of the lead agency vis-a-vis its public sector counterparts at the substate level. Relations with Nongovernmental Parties Actions by the state agency necessarily will involve special interests and groups "outside government." Here, too, the committee believes that perceptive attention to the needs, capabilities, and priorities of these parties will be critical. More than with the public sector groups mentioned just above, active involvement of the advisory council may be helpful. Creative thinking about incentives di- rected at professional groups (such as emergency nurses) and provider asso- ciations (such as the state hospital association)-for example, on matters relating to licensure, certification, accreditation, or even financing of post- graduate or continuing education will be indispensable. State Advisory Councils Structure, Membership, and Other Factors As at the federal level, state advisory councils should bring together representatives of key groups in local government and in the private sector as well as those in various state departments and offices that have an inter- est in or an impact on the delivery of emergency medical care to children. With respect to the private sector, EMS agencies and rescue squads, hospi

LEADERSHIP FOR DEVELOPING EMS-C 307 tat management, provider groups (including primary care physicians, emer- gency and critical care physicians, nurses, EMTs, paramedics, and rehabili- tation and prevention professionals), and the public are all key players. A critical step is to bring into the group a broader array of participants than those who usually address EMS and EMS-C issues or, for that matter, children's health issues. Some creativity should be used in involving public groups, and approaches to entities such as the American Red Cross, Boy Scouts and Girl Scouts, Parent-Teacher Associations, and a wide array of other volun- tary associations (e.g., the March of DimesJ should be considered. One factor that has hindered recognition of pediatric emergency care needs has been a lack of input from pediatricians and others with pediatric expertise in EMS planning and advisory groups. In many cases, neither side has appreciated that a patient population with distinct emergency care needs was being overlooked. The need for specialized care for pediatric emergencies must be made clear among groups that have not yet recognized it, and the EMS-C community has to be able to work with groups with overlapping concerns. Therefore, the state EMS-C lead agencies and their advisory councils should identify ways to include appropriate pediatric expertise. Permanent pediatric representation is preferable, but having a broad enough set of members from this area may risk making the formal advisory council too large and unwieldy. In such situations, a pediatric subcommittee might be created to advise the main group. Another tactic may be for the advisory councils to have all subcommittees, task forces, or work groups chaired or co-chaired by a pediatric representative. The specific health offices involved will depend on the state; the areas of responsibility represented should include public sector EMS systems (e.g., those administered through city fire departments), child health and welfare, hospital planning and regulation, health care provider licensing and certifi- cation, and insurance programs and policies (including Medicaid). Offices with responsibilities for the chronically ill or disabled and for any special population groups (e.g., Native Americans, non-English-speaking communi- ties) should be represented as well. In states with a large agricultural sector, a unit such as the Farm Bureau may be a valuable participant. Con- sideration also should be given to including state departments concerned with education. Finally, representatives of counties, metropolitan areas, and other forms of local government should have a place at the advisory table. In some states, substantial authority, experience, and influence in EMS lie with these local governments. The actual structures of state advisory councils will vary by state. Some states may adapt the federal model with an advisory council that is ap- pointed by the governor and includes voting members from the private sector and nonvoting public members. Others may look to different models

308 EMERGENCY MEDICAL SERVICES FOR CHILDREN such as that offered by the appointment of a state board of health by profes- sional associations or by a state health agency rather than the governor (IOM, 1988~. As with the federal advisory council, the committee advises that the term of the state councils be set for some minimum period (say, two or three years) and be- staggered. Periodic reports to the governor or the state legis- lature, or both, at least some of which are to be made public, should also be required. One Model An illustration of how advisory councils can be helpful is given by Washington State's recent experience in developing its trauma system (Esposito et al., 1992~. The governor appointed an advisory committee to study the state's trauma problem and to develop a plan for a state trauma system. Within two years, legislation was passed authorizing implementation of the trauma system. To gain a clear understanding of the patterns of trauma and trauma care in the state, the advisory committee relied heavily on obtaining and analyzing data. This information proved valuable in establishing bud- get priorities (training for rural providers was given a high priority) and in formulating system standards so as to encourage small, rural facilities to maintain or upgrade their capabilities. The value of obtaining data to make a thorough needs assessment may be an especially important message for states that have, as yet, done little to address issues of emergency medical care for children. Potential Limitations to "New" Agencies and Councils In proposing these new agencies and advisory groups, the committee recognizes that simply "establishing entities" is only part of the response that is needed to develop the emergency care capabilities to which children across the country should have access. Such organizations must be given the authority to establish regulations and implement new programs, but they also must bring some powers of persuasion into play given the political and fiscal constraints that have already been noted in the discussion of an agenda for state agencies. Thus, the credibility and enthusiasm of the members and the range of interest groups that they represent play an important part in determining the success of such organizations. Although these considerations also apply at the federal level, the com- mittee sees the responsibility for organizing and managing EMS-C services and integrating them better into both primary pediatric care and broader EMS programs as vested more in the states than in the federal government. Thus, the following discussion focuses primarily on state issues.

LEADERSHIP FOR DEVELOPING EMS-C Political Considerations 309 Some states may be reluctant to establish an EMS-C agency or advisory council because of competition for attention to many matters within the state. If many advisory bodies already exist, little energy or patience may be left for yet another group. This may be especially true if the new group is -my to p:~t -~-~nd;~;~s for new, perhaps unfam~r, tasks for state and local agencies that are already struggling to meet their current obligations. There is also some risk that a proposal for entities targeted on EMS-C will lead to a large number of similar requests from other groups that see their issues as equally compelling. Determining which, if any, of those requests to accept may be so costly in political capital that the EMS-C position will be much weaker than it might otherwise have been. Related to these points is a considerable political science literature that explores differences in state political culture and general receptivity to (and capacity for) policy innovation (Walker, 1969; Gray, 1973; Rose, 1973; Menzel and Feller, 1977; Foster, 1978; Light, 1978; Savage, 1978; Berry and Berry, 1990~. An historical lack of interest or responsiveness in such areas (e.g., health) could prove to be a problem, especially if it exists in states that have, to date, made little progress in EMS or EMS-C programs. That is, states with the biggest need to move ahead forcefully could con- ceivably be those most likely to drag their policymaking feet. Active competition among departments or among important groups in the provider community can make it difficult to form an agency or advi- sory group that can work together or that will be recognized by all sides as authoritative. Such competition may be about jurisdiction for specific programs, or it might be tied to the funding implications of recommenda- tions that the state bureaucracy might decide or the advisory council might suggest. Indeed, such fragmentation is common in many spheres of public health policy and can prove extremely difficult to overcome (see, e.g., Rabe, 1986~. Furthermore, various groups and influential individuals may not be persuaded that these special mechanisms are needed to ensure adequate attention to EMS-C concerns. Reasons for such hostility may reflect a general resistance to regulation or the view that enough opportunities exist within routine procedures to make any changes that are needed. Fiscal Constraints Another source of likely resistance stems, of course, from fiscal consid- erations. At latest count, some 35 states are in fiscal distress (Ehrenhalt, 1992; Gold, 1992; National Association of Budget Officers, 19921. This follows an explosion of state spending during the 1980s especially in the

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

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

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

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

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

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

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,^.<to~ identify specific EMS-C needs in~their States; and communities and to address the mechanisms appro- priate to. meeting those needs. The co.m~nittee advocates secretarial and gubernatorial action to ensure that EMS-C issues receive adequate atten- tion. `~To underwrite these efforts initially, the committee further recom- mends that Congress appropriate a total of $30 million each year for five years (for a total of $150 million over the period). In these efforts a broad range of parties must be represented at all levels. 'State bodies should accommodate the very diverse needs,.resources, and organizational characteristics of individual states (rather.than.attempt to reflect a preconceived single model). Significant issues at the national level include: developing a national strategy'for EMS-C, coordinating efforts throughout the federal govern- ment, disseminating. information and serving a clearin~o.~-se function, im- proving access,.to-~care, underscoring medical illness as a special concern in EMS-C, assisting education and training efforts, collecting and analyzing data, supporting enhanced research efforts, creating incentives for state ac- tion, providing technical assistance, and encouraging regional coordination. At the state level, the following matters are paramount: planning state programs, enhancing education and training, strengthening structural ele- ments of the EMS-C system, collecting and analyzing data, improving ac- cess to. care, broadening interstate cooperation, ensuring public accountabil- ity,~and taking political considerations and fiscal constraints explicitly .iI3~0 account. The committee strongly supports ' its recommendations for federal and state action on EMS-C. It recognizes limitations and.,possible resistance, but it concludes that the counterarguments and.s~engths of these types of entities outweigh the drawbacks both in general and for EMS-C in par- ticular. The committee is confident that, by starting at the highest levels with a public-private approach (as is inherent in its proposal for advisory

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

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.

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

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.

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How can we meet the special needs of children for emergency medical services (EMS) when today's EMS systems are often unprepared for the challenge? This comprehensive overview of EMS for children (EMS-C) provides an answer by presenting a vision for tomorrow's EMS-C system and practical recommendations for attaining it.

Drawing on many studies and examples, the volume explores why emergency care for children--from infants through adolescents--must differ from that for adults and describes what seriously ill or injured children generally experience in today's EMS systems.

The book points the way to integrating EMS-C into current emergency programs and into broader aspects of health care for children. It gives recommendations for ensuring access to emergency care through the 9-1-1 system; training health professionals, from paramedics to physicians; educating the public; providing proper equipment, protocols, and referral systems; improving communications among EMS-C providers; enhancing data resources and expanding research efforts; and stimulating and supporting leadership in EMS-C at the federal and state levels.

For those already deeply involved in EMS efforts, this volume is a convenient, up-to-date, and comprehensive source of information and ideas. More importantly, for anyone interested in improving the emergency services available to children--emergency care professionals from emergency medical technicians to nurses to physicians, hospital and EMS administrators, public officials, health educators, children's advocacy groups, concerned parents and other responsible adults--this timely volume provides a realistic plan for action to link EMS-C system components into a workable structure that will better serve all of the nation's children.

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