Chapter 1—
Including Children and Pregnant Women in Health Care Reform

Sarah S. Brown, Editor

National Forum on the Future of Children and Families

National Research Council

Institute of Medicine

National Academy Press

Washington, D.C. 1992



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--> Chapter 1— Including Children and Pregnant Women in Health Care Reform Sarah S. Brown, Editor National Forum on the Future of Children and Families National Research Council Institute of Medicine National Academy Press Washington, D.C. 1992

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--> Contents     Introduction   3     Underlying Themes   5     Health Insurance: Access and Benefits   8     Goal 1: Continuous access to health insurance   8     Goal 2: Affordable insurance premiums, deductibles, and other co-payments   10     Goal 3: Coverage for services that emphasize primary and preventive care   11     Goal 4: An objective process for refining and updating benefits   16     Resource Development: Services and People   16     Goal 5: Health services by qualified providers in a variety of settings   16     Goal 6: Increases in the number and diversity of qualified providers   18     Administration   21     Goal 7: Reduction in the administrative complexity of the health care system   21     Goal 8: Cooperative, complementary administrative structures to monitor and improve the health care system   23     Goal 9: Consideration of the role of government grant programs in reforming the health care system   25     Cost Management and Quality Assurance   26     Goal 10: Cost management measures to accommodate the special needs of children and pregnant women   26     Goal 11: Vigorous, well-financed systems of quality assurance and research   29     References   30

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--> Introduction Not since the 1970s has there been such interest in restructuring the health care system. Building on the foundation of Medicare and Medicaid, enacted in 1965, four successive presidents—Lyndon Johnson, Richard Nixon, Gerald Ford, and Jimmy Carter—paid such significant attention to national health care issues that many believed broad-scale reform was imminent. No such millennium has arrived, of course. Instead, the intervening years have been characterized by incremental, marginal changes in health care policies rather than by fundamental realignment of the public-private system now in place. In rapid succession over the last several years, however, many important national organizations and public policy leaders have introduced blueprints for reforming the health care system, some radically, some less so. The reasons for the current ferment include at least the following: a steady increase in the percent of gross national product (GNP) devoted to the health sector, leading to considerable anxiety about whether such growth will continue and whether it can be afforded; concern about the health and competence of the nation's work force at the turn of the century: substantial growth—by as many as 7 million people—in the number of uninsured Americans between 1980 and 1990; higher levels of uncompensated hospital care because of increased numbers of patients without any form of third-party payment for health care; alarm among corporations and employed individuals about the continued escalation of private health insurance costs; fear among the currently insured that their coverage may be canceled if they become very ill or that preexisting conditions will limit their insurability; embarrassment over the poor international ranking of the United States on such basic measures of health as infant mortality and immunization rates among children; recognition that the aging of the population will lead to increased health care costs; the problems many states are encountering in meeting their share of growing Medicaid expenditures; and, finally, the steady erosion of the public health care system because of chronic underfinancing and the seriousness and intensity of problems brought to its doorstep, including AIDS, drug addiction, and violence. Noting the renewed interest in health care reform and concerned that insufficient attention was being given to children and pregnant women in the debate, the National Forum on the Future of Children and Their Families (jointly sponsored by the Institute of Medicine and the National Research Council) arranged for a preliminary review in 1988 of current suggestions for national health care reform (Cislowski, 1988). The analysis revealed that most proposals focused primarily on ways to finance health care services for the over 30 million Americans without any form of health insurance. The complexity and enormity of the financing challenge, however, seemed to overshadow many subsidiary issues of special importance to pregnant women and to children. For example, the analysis noted the mismatch between traditional insurance coverage and many services impor-

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--> tant to child health; the absence of adequate strategies to meet the complex, multifaceted needs of technologically dependent children or seriously ill newborns; and a failure to address the increasingly limited number of obstetrical and pediatric care providers willing to serve low-income or high-risk women. Since that analysis in 1988, the debate about reforming the health care system has intensified and deepened, and issues of maternal and child health have become more prominent. In 1990, for example, the Bipartisan Commission on Comprehensive Health Care—the Pepper Commission—issued a report that recommended greatly expanded access to health insurance, beginning with children and pregnant women. In 1991, the National Commission on Children made a similar call for revisions in the health care system for this population. Leaders in both the House and the Senate have introduced proposals for reform, some of which are confined entirely to children and pregnant women or give them special attention. In addition, several private associations, ranging from the American Academy of Pediatrics to the National Governors' Association, have offered blueprints for reform. All of these proposals share the view that improving health care for children and pregnant women is a top priority in health policy. The Forum considered carefully its potential contribution to this debate and concluded that while ''children's issues'' now seem in vogue, the complexity and constantly changing dimensions of national discussions about health care reform hold the risk that the special problems of children and pregnant women will be overlooked. In particular, the health services needed by this group, which are frequently routine and predictable, are often not paid for in a risk-based health insurance model—the model that dominates current discussions of health system reform. Thus, the Forum decided to develop a monograph discussing the important health policy issues presented by children and pregnant women that should be addressed by any major proposal for health care reform. Such a document should be useful to policy makers considering ways to improve the nation's system of health care. The Forum convened two workshops for this purpose. The individuals who participated in these sessions are listed on pp. 79–86, and several outside experts were drawn into the discussions as well. At the first session, participants outlined 11 goals central to maternal and child health that they agreed should form the foundation of any major reform. The goals are consistent with many major reports on maternal and child health that have been completed recently (see below). The participants also discussed examples of how each goal might be translated into the language of health policy and legislation. At the second workshop, the participants met with individuals associated with seven major proposals for health care reform—chosen from about 35 then in wide circulation—to learn more about why the authors settled on their particular approaches. the political forces that shaped their efforts, and how each of the proposals addresses the goals outlined by the participants at their first workshop. This discussion of specific proposals was undertaken primarily to explore ways in which the

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--> goals outlined earlier by the workshop participants could be reached through legislation, not to critique the plans themselves. The seven proposals reviewed by the workshop participants were selected as representative of the major ideas for reform currently being considered by the U.S. Congress and by others interested in health system reform. The participants chose to review only proposals that were national in scope, although states have recently been very active and innovative in health care reform. Three proposals from private associations were studied along with four developed by members of Congress. Five of the seven are "multipayer" plans, that is, they retain a mix of private health insurance and one or more publicly financed programs. [In the original report, each goal was applied, in an illustrative way, to seven specific legislative proposals that were being considered in 1992. These sections are out of date and are not included in this volume.] This monograph summarizes the two workshops and is organized around the 11 goals identified by the participants. The statement of each goal is followed by a brief section that amplifies the goal and offers examples of how it might be attained in a proposal for health care reform. The eleven goals presented in this monograph capture much that is important to the health of children and pregnant women. But the paper is only a beginning, and many details of implementation especially remain to be crafted. Hopefully, it will be a stimulus to deeper and more thorough consideration by other groups—particularly the U.S. Congress—of how best to meet the needs of this important population when reforming the nation's complicated system of health care. Underlying Themes Discussions among the workshop's participants were based on several shared values. First is the view that providing access to health care is a basic social obligation, equivalent to providing access to education, and that the ability to obtain health care should not rest on any particular attribute, especially income. Similarly, the participants believe that the long-term goal of health care reform should be to extend health care to all Americans, male and female, young and old, not just children and pregnant women. Indeed, the notion of a fundamental obligation to provide health services to all citizens has become a familiar refrain in discussions of health policy, and assertions of a basic right to health care appear in the preamble of virtually all proposals reviewed at the workshops. The participants noted that their assigned focus on children and pregnant women was well justified by data documenting their substantial representation among the uninsured. In 1989, 29 percent of the U.S. population was under age 21, but they represented 36 percent of the uninsured—12.4 million children under the age of 21 were uninsured in that year (Foley, 1991). In addition, the National Commission on Children has estimated that in 1990, 433,000 pregnant women had no health insurance, representing 9 percent of all pregnant women (National

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--> Commission on Children, 1991). Part of the explanation for such numbers is that many children and pregnant women are themselves not insured directly but are instead the indirect beneficiaries of a parent's or spouse's employment-based private insurance. Being one step removed from the source of insurance—that is, receiving coverage as a dependent—is an increasingly expensive and insecure basis upon which to receive health care coverage. Because of the increasing cost of dependent insurance, employers are ever more reluctant to meet the full cost of that coverage, asking instead that their employees pay a larger proportion of additional coverage. In 1980, for example, 40 percent of employers paid the full cost of dependent coverage; in 1990, only 33 percent did so (National Commission on Children, 1991). Such trends underlie the finding that 23 percent of uninsured children live in families with insured parents (Foley. 1991). These data also supported a consensus among the participants that, over time, the health care needs of children and pregnant women will best be served by a policy that avoids pitting the relatively modest needs of this population against other populations and health care demands. The participants discussed, for example, the current practice in the Medicaid program of placing flat dollar and duration limits on coverage of ambulatory services but not on coverage of long-term care services—a practice that has led many state Medicaid programs to spend an ever larger share of their funds on the elderly, further reducing resources for children and pregnant women, who rely primarily on ambulatory services. Another underlying theme of the workshops was the recognition that although financial barriers are a major—some say the major—obstacle to health care services, other important barriers can be defined for children and pregnant women (Institute of Medicine, 1988a). These obstacles include inadequate diversity, supply, and distribution of providers; poorly organized or even absent health care services in such areas as inner cities and rural communities; tangled relationships between public and private systems of care; and insufficient collection and evaluation of data to monitor the health of children and pregnant women. The latter creates a barrier to care by limiting the ability of providers and administrators to concentrate their efforts efficiently or to identity shortcomings. Although securing a reliable and adequate source of payment for health care is clearly a very important first step, and the major focus of most current proposals, it is only a first step, necessary but not sufficient. Accordingly, the goals begin with access to health insurance but then extend to other, equally important issues. By presenting such a broad list of goals, however, the participants did not wish to imply that all problems of the nation's complicated health care system will necessarily be solved in one piece of reform legislation. In fact, it may be more realistic to urge that incentives for needed policies be enhanced and disincentives reduced, and to ask Congress to enact a series of laws over time, rather than to look for resolution of many long-standing problems in a single bill. The workshop participants recognized explicitly that, in the great scheme of things, many determinants of maternal and child health status have little to do

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--> with access to or use of medical services, as traditionally defined. Poverty, education, housing, violence, and family environment often overshadow whatever impact health services are able to make, and parents remain potent influences on the health and development of their children. Even the outcomes of pregnancy, a major theme of this monograph, may have more to do with personal choices and behavior, with socioeconomic factors, and with the general health of women than with any of the particular health services detailed here. Thus, while the participants considered how to reform the health care system in ways that serve the needs of children and pregnant women, they agreed that achieving major improvements in health status may well require new personal choices, a deeper commitment by parents to enhancing their children's health, and social changes more far-reaching than even the most comprehensive proposal for health care reform envisions. A final note. The workshop participants were not asked to construct their own proposal for health care reform, but instead to discuss those issues important to maternal and child health that they believed should be included in any reform bill. As a consequence, the participants identified the goals without having to meet a particular budget target or to identify financial offsets to support their ideas. Although the participants believed that the goals could be met with existing resources, or perhaps a modest increase in overall expenditures, no formal cost analysis was attempted. In addition, although one of the issues in health care reform is how best to finance the health care system—through government, employers or both, in varying combinations and structures, and with various tradeoffs—the participants' primary concern was the health services needed by children and pregnant women that must be addressed in any reform plan, regardless of the mechanism of financing. The participants took no position as to which financing approach is preferable and were neither asked to offer, nor offered on their own, a preferred model of reform. Indeed, the consensus was strong that there are many ways in this pluralistic, complicated country to achieve a given end and that the needs of children and pregnant women can be met well by a wide variety of systems to finance and deliver health care. The goals of the workshop participants are consistent with numerous thoughtful and well-documented reports and books that have been completed in the last several years. These include Institute of Medicine, 1989b, 1988a, and 1985; Merkatz and Thompson, 1990; National Governors' Association, 1991 and 1989; the Alan Guttmacher Institute, 1991; U.S. Department of Health and Human Services, Public Health Service, 1991; and U.S. Preventive Services Task Force, 1989. Additional references are cited throughout the text.

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--> Health Insurance: Access and Benefits Goal 1: All children and pregnant women have continuous access to health insurance. Discussion Access to a source of payment for health care—typically, health insurance—should be available regardless of employment status, family income, age, health or marital status, family composition, or geographic location. In addition, coverage should be continuous, despite changes in any one or more of these factors. In particular, a change in the employment status of an adult should not disrupt coverage of his or her dependents. However straightforward this goal, it remains elusive under present arrangements. Coverage by private health insurance often requires individuals and families to meet such requirements as a minimum length of time employed, good health status, a particular degree of relationship to a covered person, lawful U.S. residence, and so forth. The Medicaid program also imposes a wide variety of preconditions centering on income, residence, age, family composition, and other factors. Failure to satisfy one or more requirements can cause pregnant women and children to be ineligible for coverage altogether or ineligible for coverage for a period of time or for certain conditions. Principally for reasons of cost containment, health insurance plans may exclude certain groups with special relevance to maternal and child health; in some instances, legal concerns form the basis for exclusions (as when health insurance is not available to children in certain types of custodial arrangements). These groups include adolescents and young adults not yet insured on their own who have attained the age of majority as defined by their parent's insurer (and who do not receive coverage through one of the exceptions provided in the insurer's plan, such as enrollment in college); undocumented U.S. residents; adopted children; children who are not related closely enough to their caretakers to be covered by the caretaker's insurance plan (for example, children living with a grandparent or older sibling); and dependent adult children (such as a chronically ill adult living with his or her parents). The exclusion of undocumented residents is of special relevance to maternal and child health because many of these persons are mothers, children, and pregnant women. Of the 2 to 4 million undocumented people in the United States at present, the majority are women. Women of reproductive age (15 to 44) are believed to comprise 30 to 40 percent of the total; 20 percent are believed to be children under 15 (Passel, 1991). More generally, the need to provide undocumented residents with a source of payment for health care is suggested by their significant contribution to the uncompensated care debt reported by hospitals in

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--> such states as Texas, California, Florida, New York, and Illinois, where there are large populations of such individuals. In addition, and again for reasons of cost, some individuals within covered populations are denied health insurance because of medical underwriting practices (such as denying coverage because of preexisting conditions1 or a history of large claims); provisions that exclude pregnant minor family members and their children; and waiting periods for coverage to begin. Similarly, groups of individuals may be effectively excluded from coverage by dramatic increases in premiums brought about by high costs incurred by one or two members of the group. In multipayer systems—particularly those that incorporate employer-based private health insurance—problems of continuity in coverage are particularly salient. Continuous coverage may be interrupted when, for example: an insured worker changes jobs, interrupting coverage for the worker and his or her dependents; a public plan, such as Medicaid, fails to pick up immediately coverage of a family or individual when private coverage is lost; or a move to a different community or state results in loss of coverage (a liability of state residency tests). To meet the goal of full and continuous health insurance coverage for children and pregnant women, all these excluded groups must be given access to health insurance and the specific barriers to continuous coverage eliminated. This might be accomplished by requiring all individuals in the United States to be covered by health insurance at all times as a matter of law or by trying to achieve this same end through the gradual elimination of all exclusions and gaps. It will be important under multipayer plans especially to separate the public portion of health insurance from the welfare system as much as possible. The stigma of welfare has been documented repeatedly as a deterrent to individuals' seeking Medicaid coverage or publicly subsidized health care, and there is obvious appeal to treating health programs differently from income supports (National Commission to Prevent Infant Mortality, 1988). If multipayer programs require means testing—for example, for individuals in the public insurance system to obtain premium subsidies—such determinations should be conducted in an environment less adversarial than a typical welfare office. In addition, if administratively possible, it would be useful to allow the paper work completed when applying for public health insurance to be used also for application to other social services such as food stamps and WIC (Special Supplemental Food Program for Women, Infants, and Children). Along these same lines, it may be wise, particularly in 1   Of great potential significance for insurance practices is the growing ability to detect conditions before the onset of symptoms. For example, the mapping of the human genome may eventually permit both prenatal and childhood diagnosis of genetic risk factors for diseases and conditions that may not manifest themselves until later in life. Whether such genetic information will be used as a basis for denying or limiting access to health insurance is not known, but the possibility of such exclusions merits vigilance and open discussion.

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--> multipayer systems, to arrange the financing system in a way that leaves providers of care unable to determine a client's source of insurance coverage—that is, "blinding" the provider to whether an individual is covered by a public or private plan. Reaching the goal of continuous access to health insurance also requires safeguarding the financial viability of the insurance plan or plans. For example, if a reform proposal relies on private insurance, such private plans should have to meet standards for reserve funds that are sufficient to pay all unpaid claims. Under current practices, insurance companies are regulated by the states, and self-insured plans are regulated in a general way by the U.S. Department of Labor under ERISA to ensure that they meet their fiduciary responsibilities. A reform proposal should extend these standards to new public plans, either by making them subject to these laws or by providing that their trust funds be managed according to sound actuarial standards if they are administered by a public entity. [The section applying goal 1 to legislative proposals has been deleted.] Goal 2: Personal expenditures for the health care of pregnant women and of children, including insurance premiums, deductibles, and other co-payments, are affordable. Discussion Even if all the gaps and barriers to coverage outlined under goal 1 are eliminated, actual access to health insurance can be limited by cost-sharing provisions that individuals cannot afford. Cost sharing in health insurance can be burdensome in three principal ways. First, if the cost of premiums is too high for an individual or family to manage, coverage may be effectively denied. For example, even when coverage is initially affordable, groups of individuals may find themselves effectively excluded from coverage by dramatic increases in premiums due to the high costs incurred by one or two members within the group. Second, high cost-sharing requirements after coverage begins—through large deductibles and heavy coinsurance outlays—can result in major out-of-pocket payments. In particular, balance billing 2 can place a heavy financial obligation on consumers, particularly the poor. Third, the absence of reasonable stop-loss protections can mean that persons with catastrophic medical expenses will exhaust their coverage. To give children and pregnant women genuine access to health insurance 2   Balance billing refers to the practice of demanding patient payments for services over and above what the patient's insurer's fee schedule will cover (minus applicable deductibles and coinsurance). The Medicaid program prohibits balance billing; it is an issue primarily in transactions involving private health insurance.

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--> and, therefore, access to health care, personal expenditures for coverage and care must be affordable. Strategies that address affordability include, for example, establishing sliding fee scales for premiums, deductibles, and other co-payments; waiving all out-of-pocket expenses for low-income individuals; and limiting, perhaps prohibiting, balance billing in certain circumstances. [The section applying goal 2 to legislative proposals has been deleted.] Goal 3: Coverage is provided for a continuum of services that emphasizes primary and preventive care and includes the diagnosis and management of a variety of diseases and conditions, as well as specialized care to handle complex health problems. Discussion Four overlapping issues related to covered benefits are taken up in this section: (1) defining the services that should be covered by health insurance; (2) ensuring access to important, medically necessary services that fall outside a benefits package; (3) addressing the problem of noncomparable benefits across insurance plans, especially public versus private ones; and (4) encouraging participation in preventive services. Covered Benefits Deciding which services should be financed under a given health insurance scheme has proven to be one of the most contentious issues in health policy. This is especially true for maternal and child health, because many of the most important services do not fit well with a risk-based insurance model and many therapeutic interventions are as much educational, social, and behavioral as medical. In a world of unlimited resources, agreement could probably be reached quickly about the health services that should be available to pregnant women and to children. Some arguments might arise about who should provide a particular service (such as assistance in stopping smoking), or whether a particular intervention is really a health service or a social service (for example, respite care). But in general, a consensus would be easy to develop. In the face of limited resources, however, disagreements arise about the definition of essential health services, what works (or, in current parlance, has been shown to be "effective"), and what should be included in a benefits package. In the midst of such complexity, the content and availability of services vary enormously from state to state, across insurance and managed care plans, and often from benefit period to benefit period, even in the same system. In particular, benefits packages in private insurance—and even in some publicly financed programs—may omit coverage of services important to children and pregnant women. For example, few, if any, private plans cover many of the benefits that children with chronic illnesses and

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--> and the method for participating in the plan. Assistance should be offered employees in completing claims forms and other documents; for a publicly financed program, the reform proposal should require that enrollment forms be brief, available in other languages as well as English, require minimum documentation, and be available in a wide variety of easily accessible locations (including the point of service), such as private physicians' offices, WIC clinics, hospital outpatient clinics, and Head Start programs. It should also be possible to submit the application by mail, and employees should be able to pay premiums for the public plan through payroll deductions. Materials should be made available to enrollees in the public plan describing its coverage, how to use it, and any important administrative limitations that a consumer should understand; the reform plan should set up an on-going forum or administrative body to assess and improve the administrative and reimbursement problems experienced by providers under both private and public plans (especially Medicaid). These problems include difficulty in determining whether a particular patient is eligible for coverage under a particular plan, unreasonable restrictions on the types of services covered, extensive delays in paying claims, delays in receiving precertification approvals, and unwieldy claims processing. State-level experience in this area will be particularly helpful: for example, some states have been developing specific training programs, hotlines to resolve reimbursement problems, visits to providers by representatives of various payment plans to explain procedures, and so on). Because it is more difficult for individuals to secure continuous health insurance coverage under multipayer models, reform proposals that retain a complicated mix of public and private financing should devise some means of moving between plans—especially between public and private plans—that is swift and easy. It may also be important to create additional mechanisms for "special needs" children and their families to coordinate benefits, providers, and other resources across multiple insurers. [The section applying goal 7 to legislative proposals has been deleted.] Goal 8: Cooperative, complementary administrative structures are established spanning public and private sectors to monitor and improve the health care system used by children and pregnant women. Discussion Increasing access to health insurance should be accompanied by a careful reconsideration of the administrative structures that govern the U.S. health care system, especially that portion used by children and pregnant women. Many of the reports referenced earlier in this monograph discuss the need to improve the

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--> ways in which health care is administered in the United States. They urge, in particular, that means be found to blend the efforts of the public and private sectors in a more coherent fashion, and that financing agencies be brought into closer alignment with programs that actually provide services. They also point out the need for administrative structures to monitor overall performance in the health care system according to a set of standards; to fill gaps in care as they appear, particularly for more vulnerable groups; and to be understandable to both providers and consumers. Several administrative structures might move matters in these general directions. Whatever the construct chosen, important administrative functions that the proposal should address include the following (Select Panel for the Promotion of Child Health, 1980): monitoring the overall health status of children and pregnant women in relationship to such standards as the "Year 2000" goals that is, immunization levels, trimester of enrollment into prenatal care, rates of cesarian section, and so on); monitoring health care expenditures in both public and private health sectors to ensure that the monies are spent as intended and relating those expenditures to the health outcomes achieved (this monitoring will require, among other things, assembling and analyzing uniform claims data from both public and private payers and postaudit functions sensitive to the needs of children and pregnant women); filling gaps in care as they emerge (that is, placing and financing services in areas that remain without necessary providers, if all other remedies fail); monitoring provider behavior and qualifications; providing public information and education services, and professional training; developing approaches to cost management and quality control that emphasize health outcomes (see goals 10 and 11 below); and supporting research important to children and pregnant women either by direct funding or by encouraging other public and private groups to study key topics (see goal 11). Since these responsibilities require financial resources, a proposal for health care reform must not only clarify the administrative framework for these functions, but also ensure that enough money—and legislative authority—is available to perform assigned tasks. Some existing structures at the state level that could be used as a basis for meeting these responsibilities are the maternal and child health authorities, funded in large part by the Maternal and Child Health Services Block Grant. One particularly important task that blends administrative issues and issues of direct service delivery merits emphasis: developing networks of care for expensive or relatively rare diseases and conditions of childhood. Some such

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--> networks already exist. Regionalized systems of perinatal care are perhaps the most widely recognized, but networks of specialty care also exist for cystic fibrosis and other low-prevalence disabling conditions and for pediatric emergency services. These networks are especially important in rural areas which do not have the critical mass of people needed to attract a full range of specialty services. The private indemnity and managed care industries are also rapidly developing contract networks of special centers (often called "centers of excellence") to provide care that requires high-cost technology, specialized procedures, and medical interventions on the cutting edge of research (Behrman, 1991). In any reform of the health care system, the usefulness, function, and future of these networks should be considered. For children with diseases or conditions such as spina bifida and cerebral palsy, particular attention should be paid to the relationship between community-based services and services orchestrated through specialty networks. Some services—such as primary care, some types of therapy. and coordination of care—should perhaps be offered at the community level, whereas others are more properly provided at the hub of a regionalized network (Hobbs et al., 1985). To address these interrelated issues, a reform plan might: charge the governance entity (or entities) described above with responsibility for reviewing the role and performance of various maternal and child health networks, for recommending areas in which they should be expanded or diminished, and for working with states and communities to accomplish needed changes. In some instances, it may be important to finance networks directly or to increase support of those already receiving some assistance. The agency or agencies should specifically consider the relationship between networks of care and managed care plans (see goal 10 below for additional discussion of this issue); require that third-party payers reimburse services provided through these networks; or finance such services directly through grants. [The section applying goal 8 to legislative proposals has been deleted.] Goal 9: The future role of existing government grant programs in maternal and child health is explicitly considered in reforming the health care system, with regard to both the personal health services supported by these grant programs and to their planning, evaluation, and training functions. Discussion Expanding the availability and affordability of health insurance intensifies the ongoing debate about the future role and structure of the public health system

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--> in providing personal health services, and it raises specific questions about the fate of many grant programs funded through the Public Health Service (PHS), the Social Security Administration, and other authorities. Examples of such programs that are especially important to children and pregnant women include: Title V, the Maternal and Child Health Services Block Grant, the Preventive Health Services Block Grant, Childhood immunization grants to states, Health services that are part of special education programs, Pediatric emergency medical services, Title X family planning services, Pediatric AIDS health care demonstration program, Injury control grants, Grants for lead poisoning prevention and abatement, and Poison control activities. Many of these programs provide health services to those with no source of payment for health care, serving in some instances as providers of last resort. Some of these programs serve special populations or provide important health services that third-party reimbursement does not cover. Many of them address such community-level problems as prevention of lead poisoning and traumatic injury, not easily handled through one-on-one health services financed by traditional insurance. These grant programs can be innovators in systems that provide few incentives for coordinated, interdisciplinary care (for example, special services for children with multiple handicaps), and have the capacity to move easily across traditional boundaries between health and other human service and educational areas. In addition, they often carry out community-level planning, needs assessment, data collection and analysis, and training—tasks that cannot easily be assumed by individual providers of care. Given the importance of these public health grant programs, their future role should be considered in reform proposals. Are they to be eliminated? Folded into the new public system? Retained as is? If the intent is to fund all, or most, personal health services through insurance, what is to be the fate of the functions that public health grant programs often encompass? Are some services best financed and regulated through public health systems but provided by private institutions and individuals? Answers to these questions pertain directly to the future course of the public health system, of which maternal and child health services are only a part (Institute of Medicine, 1988b). In practical terms, bringing some order to all these programs and defining their relationship to a new financing system will be exceedingly difficult, not only because each has its own bureaucracy and constituency, but also because not all are under the jurisdiction of the same congressional committees. Deciding the future role of special grant programs will require that policy

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--> makers carefully consider ways to manage some of the most serious health and social problems that infants, children and adolescents bear, such as pediatric HIV disease, child abuse, teenage pregnancy, youth violence, and substance abuse. Clearly, universal access to health insurance is likely to make only a small impact on these issues, because they involve a complex array of socioeconomic and behavioral issues in addition to medical concerns. Managing them effectively may well require a series of intensive categorical programs, well integrated into others systems of health and social services. Despite these complexities, the future of the grant programs requires attention. A proposal could, for example, suggest in the bill's accompanying report that all the grant programs at issue remain intact for a significant period of time to see how the new insurance and payment provisions affect need and demand for the grant-supported personal health services. It is important to stress, however, that even if such an inquiry reveals that grant programs are no longer required to finance personal health services, the need to continue—and even strengthen—the monitoring, administering, and training tasks now supported by these programs will remain. These functions need to be given a permanent home and adequate support. One special aspect of this issue merits emphasis—the fate of state and local monies currently invested in maternal and child health services. Not including Medicaid expenditures, state health agencies spent $8.3 billion in fiscal year 1988 on public health programs; although some of these funds came from federal grants and contract funds, more than half were raised at the state and local levels (Public Health Foundation, 1990). An important proportion of these expenditures was on maternal and child health and played a vital role in the support of local health clinics, public hospitals, and specialized medical and health care in schools, institutions, and other settings. A major revision of health care financing would undoubtedly cause states and localities to rethink and possibly reconfigure their own expenditures in this area, but whatever the realignments, it is important that a proposal for reform not interfere with the ability of states and localities to create and support their own health services and systems. [The section applying goal 9 to legislative proposals has been deleted.] Cost Management and Quality Assurance Goal 10: Cost management measures accommodate the special needs of children and pregnant women. Discussion With the relentless escalation of health care costs, cost containment has become a major force driving the discussion of health care reform. Accordingly,

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--> any reform proposal must include specific measures for keeping national health expenditures, whether tax-supported, direct, or out-of-pocket, at some reasonable, acceptable proportion of national income. Clearly, containing the growth of health sector costs is vital to preserving scarce national resources for other competing needs. Two principal approaches to overall cost management and containment are in current proposals for health care reform: managed care and global budgeting. Managed care deserves special comment because of its growing popularity as a tool for managing costs for privately insured as well as Medicaid-insured children and pregnant women. Managed care systems have developed largely in response to various problems in the fee-for-service system, including the steady rise in health care costs. These new practice arrangements include various payment and provider networks designed to contain costs by negotiating reduced fees with providers enrolled in the system, limiting consumers' freedom of choice, and, in theory, improving the care of patients through increased access to private physicians (in the case of Medicaid) and increased monitoring of provider behavior. These systems usually incorporate continuous quality improvement mechanisms and incentives to provide only appropriate and necessary care, and are accountable to purchasers and patients on the basis of cost, quality, and outcomes. It is important to add, however, that despite their growing popularity, managed care systems have yet to demonstrate conclusively that they contain costs. From the maternal and child health perspective, the critical issue is whether managed care arrangements meet the health care needs of this population. Limited data and anecdotal experience with managed care for children and pregnant women identify several concerns (Cartland and Yudkowsky, 1992). First, there remain some questions about the proper role of the "gatekeeper" function for a pediatric population. In some instances it may be helpful, as for children with chronic illnesses whose access to primary care services may be facilitated by health maintenance organizations (HMOs); in others instances, the result may be less favorable, as when managed care networks conflict with existing systems for triaging and transporting seriously ill newborns. Second, managed care networks may place strict limits on access to providers who are not enrolled in the plan, even when their skills are not available from plan providers; although such limits may be appropriate for essentially well children, they can pose major obstacles to needed care for children with more serious and rare diseases and conditions. And third, managed care can generate conflicts between the fundamentals of good medical care and the pressures of cost containment (as exemplified by the growing practice among managed care plans of denying more than 24 hours of hospitalization after a normal vaginal delivery and limiting coverage of postpartum home-based nursing care for early discharge patients). It is important to add, nonetheless, that as managed care becomes a more common administrative arrangement, and experience with it increases, it is pos-

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--> sible that many of the actual or imagined problems that it presents will be resolved. Moreover, the pros and cons of managed care need to be weighed not in isolation but in comparison with the fee-for-service system it often replaces, which itself has significant liabilities, such as contributing to health care cost inflation, overuse of physician services, tests and procedures, and poor coordination across individual providers. This suggests that, over time, all forms of medical practice—fee-for-service, managed care and other arrangements—require careful oversight from the perspective of both cost and quality (see goal 11). If a reform proposal incorporates systems of managed care, the concept should be clearly defined to include not only the goal of cost containment, but also the provision of high-quality care that is appropriate to the level of need. In addition, the proposal should specify that, over time, managed care will be evaluated not only on the extent to which it limits costs, but also on the extent to which it ensures access to needed services and achieves positive health outcomes. The other major approach to cost containment—global budgeting—is the cornerstone of most single-payer proposals and raises a different set of concerns. This approach requires, in essence, that a single sum of money be allocated for all health expenditures nationally and that all providers function within prearranged, fixed budgets. In a system that relies on global budgeting, it is important that explicit steps be taken to ensure that children and pregnant women be provided with adequate health care resources—that some process be established to ensure that the aging of the population (with its increasing demands for health care services) not erode the resources available to children and pregnant women (Fuchs, 1990; Sugarman, 1991). For example, a global budgeting system can set its benefit, eligibility, and administrative requirements in such a way that the needs of children and pregnant women are well attended. Alternatively, or additionally, a mechanism can be used to set a minimum level of expenditures for this population. Moreover, if the nation does adopt global budgeting, it is reasonable to predict that, particularly at the outset, expenditure targets would mirror existing patterns of expenditures—in effect freezing all current inequities for several years at least. This possibility suggests that plans based on global budgeting should devise some means at the outset for better meeting the needs of children and pregnant women, and correcting some of the problems noted elsewhere in this monograph. [The section applying goal 10 to legislative proposals has been deleted.] Goal 11: Vigorous, well-financed systems of quality assurance and research are supported.

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--> Discussion As noted above, quality assurance must be a major part of cost management. No matter what the health care system's mix of managed care, fee-for-service, or other payment arrangements, several dimensions of quality assurance are particularly important to children and pregnant women and should be encompassed in any comprehensive reform of the health care system. They include: supporting long-term, continuous relationships between providers and consumers (for example, continuity of care), especially for children with special needs and for other high-risk individuals; ensuring adequate provider credentialling with regular reviews; supporting partnerships between parents and providers around the care of children; ensuring the confidentiality of health care, particularly for adolescents; providing both providers and consumers with grievance procedures to resolve disputes over charges, reimbursement, and related issues; and helping to ensure that health care services are provided in a timely fashion without excessive waits for appointments, in convenient locations and settings, in culturally sensitive environments, and with adequate systems in place for patient monitoring and follow-up. Research is essential to quality assurance. Policy makers and the public alike understand the need for a strong national commitment to a broad program of research in the overlapping fields of biomedicine and clinical practice, health services, epidemiology, and related fields. Accordingly, any major proposal for reshaping the health care system should be accompanied (in companion legislation or in clear congressional intent) by generous and stable support for health-related research, broadly defined. It might even be wise to peg overall health-related research expenditures to some minimum fixed percentage of health care expenditures. In particular, strong ties between the clinical research community and those who design the benefits package of a health care financing plan should be fostered. That is, the benefits package should be continually revised in light of new research findings, and those who provide and pay for services should be able to let researchers know what issues merit investigation from their point of view. Similarly, the complexity of the health care system, the large sums of money it consumes, and the prospect that it might be significantly altered by major national legislation underscore the need for research on health systems, on financing, and on other aspects of health services delivery. Two aspects of research pertinent to quality assurance deserve special comment: the development of practice guidelines and the growing interest in outcomes research, both of which are closely related to the general field of technology assessment. Two federal agencies very active in this type of investigation

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--> include the Office of Technology Assessment (OTA) and DHHS's Agency for Health Care Policy and Research (AHCPR), neither of which has focused intently on maternal and child health for a variety of reasons. In the case of the OTA, for example, the research portfolio of the agency is determined largely by Congress, which asks OTA to pursue certain specific issues; and in recent years, most of those requests have not emphasized maternal and child health. It is important that these agencies and related research institutions pay adequate attention to the many unresolved issues in health care for children and pregnant women, in part because some clinical issues have major cost implications (such as resolving issues in the management of otitis media) and because some of the procedures needing further definition and refinement are performed frequently on large numbers of children (for example, well-child care). With regard to outcomes research especially, the results of clinical interventions should be assessed in part by their overall impact on public health (using such measures as rates of infant mortality and adolescent suicide), not just on a single individual or a small, atypical population. In addition, outcomes research should distinguish carefully between results obtained in adults and those obtained in children. [The section applying goal 11 to legislative proposals has been deleted.] References The Alan Guttmacher Institute 1989 Blessed Events and the Bottom Line: The Financing of Maternity Care in the United States. New York: The Alan Guttmacher Institute. 1991 Preventing Pregnancy, Protecting Health: A New Look at Birth Control Choices in the United States. New York: The Alan Guttmacher Institute. American Academy of Pediatrics 1991 Children First: A Legislative Proposal, 1991. Washington, D.C.: American Academy of Pediatrics. American Academy of Pediatrics and American College of Obstetricians and Gynecologists 1988 Guidelines for Perinatal Care. Washington. D.C.: American Academy of Pediatrics and American College of Obstetricians and Gynecologists. Behrman, R.E. 1991 Personal communication regarding Health Care Technology Conference of Sanus (New York Life Insurance Co., New York, October 30, 1991). The David and Lucile Packard Foundation, Los Altos, Calif., November. Cartland, J., and B.K. Yudkowsky 1992 Barriers to referral in managed care systems. Pediatrics 89:183–192. Cislowski. J.A. 1988 A review of proposals to expand health insurance coverage and liability. Unpublished manuscript. National Forum on the Future of Families, National Research Council. Foley, J.D. 1991 Uninsured in the United States: The Nonelderly Population Without Health Insurance—Analysis of the March 1990 Current Population Survey . Special Report SR-10. Washington, D.C.: Employee Benefit Research Institute.

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--> Fuchs, V.R. 1990 The health sector's share of the gross national product. Science 247:534–538. Health Policy Agenda for the American People, Ad Hoc Committee on Basic Benefits 1988 Basic Benefits Package. Chicago: Ad Hoc Committee on Basic Benefits. Himmelstein, D.U., and S. Woolhandler 1986 Cost without benefit: Administrative waste in U.S. health care. New England Journal of Medicine 314:441–445. Hobbs, N., J.M. Perrin, and H.T. Ireys, eds. 1985 Chronically III Children and Their Families: A Source Book on Problems. Services and Policies. San Francisco: Jossey-Bass. Hughes, D., K. Johnson, S. Rosenbaum, J. Simons, and E. Butler 1988 The Health of America's Children: Maternal and Child Health Data Book. Washington, D.C.: Children's Defense Fund. Institute of Medicine 1985 Preventing Low Birthweight. Committee to Study the Prevention of Low Birthweight. Washington, D.C.: National Academy Press. 1988a Prenatal Care: Reaching Mothers, Reaching Infants. Committee to Study Outreach for Prenatal Care. Washington, D.C.: National Academy Press. 1988b Future of Public Health. Division of Health Care Services. Washington, D.C.: National Academy Press. 1989a Medical Professional Liability and the Delivery of Obstetrical Care. Committee to Study Medical Professional Liability and the Delivery of Obstetrical Care. Washington, D.C.: National Academy Press. 1989b Primary Care Physicians: Financing Their Graduate Medical Education in Ambulatory Settings. Committee to Study Strategies for Supporting Graduate Medical Education for Primary Care Physicians in Ambulatory Settings. Washington, D.C.: National Academy Press. Lear, J.G., H.B. Gleicher, A. St. Germaine, and P.J. Porter 1991 Reorganizing health care for adolescents: The experience of the school-based adolescent health care program. Journal of Adolescent Health 12:450–458. Merkatz, I.R., and J.E. Thompson 1990 New Perspectives on Prenatal Care. New York: Elsevier. National Commission on Children 1991 Beyond Rhetoric: A New American Agenda for Children and Families. Washington, D.C.: National Commission on Children. National Commission to Prevent Infant Mortality 1988 Death Before Life: The Tragedy of Infant Mortality. Washington, D.C.: National Commission to Prevent Infant Mortality. National Governors' Association 1989 Strategies for Improving State Perinatal Programs. Washington, D.C.: National Governors' Association. 1991 Strategies for Improving State Child Health Programs. Washington, D.C.: National Governors' Association. Passel, J. 1991 Personal communication. The Urban Institute, Washington, D.C., December. Peoples, M.D., R.C. Grimson, and G.L. Daughtry 1984 Evaluation of the effects of the Carolina improved pregnancy outcome project: Implications for state-level decisionmaking. American Journal of Public Health 74:549–554.

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--> P.L. 101–597: The National Health Service Corps Revitalization Act 1990 Conference Report. 101st Congress, 2nd Session. Washington, D.C., November 16. Public Health Foundation 1990 Public Health Agencies 1990: An Inventory of Programs and Block Grant Expenditures. Pub. No. 120. Washington, D.C.: Public Health Foundation . Rooks, J., and J.E. Haas, eds. 1986 Nurse-Midwifery in America. Washington, D.C.: The American College of Nurse-Midwives Foundation. Rooks, J.P., N.L. Weatherby, E.K.M. Ernst, S. Stapleton. D. Rosen, and A. Rosenfield 1989 Outcomes of care in birth centers: The national birth center study. New England Journal of Medicine 321:1804–1811. Select Panel for the Promotion of Child Health 1980 Better Health for Our Children: A National Strategy. Washington, D.C.: Select Panel for the Promotion of Child Health. Strobino, D.M., G.A. Chase. Y.J. Kim, B.E. Crawley, J.H. Salim, and G. Baruffi 1986 The impact of the Mississippi improved child health project on prenatal care and low birthweight. American Journal of Public Health 76:274–278. Sugarman, J. 1991 The Children's Investment Trust. Testimony presented before the Budget Committee of the U.S. Congress, June 26, 1991. Washington, D.C. U.S. Congress, Office of Technology Assessment 1987 Technology-Dependent Children: Hospital vs. Home Care. Philadelphia: J.B. Lippincott. U.S. Congress, Office of Technology Assessment 1988 Healthy Children: Investing in the Future. OTA-H-345. Washington, D.C.: U.S. Government Printing Office. U.S. Department of Health and Human Services. Public Health Service 1989 Caring for Our Future: The Content of Prenatal Care. Washington, D.C.: U.S. Department of Health and Human Services. 1991 Healthy People 2000: National Health Promotion and Disease Prevention Objectives. DHHS pub. no. (PHS) 91-50213. Washington, D.C.: U.S. Department of Health and Human Services. U.S. House of Representatives, Select Committee on Children, Youth, and Families 1990 Opportunities for Success: Cost Effective Programs for Children . Washington, D.C.: U.S. House of Representatives. U.S. Preventive Services Task Force 1989 Guide to Clinical Preventive Services. Washington, D.C.: U.S. Preventive Services Task Force. Weiner, J.M.. and J. Engel 1991 Improving Access to Health Services for Children and Pregnant Women. Washington, D.C.: Brookings Institution. Yudkowsky, B.K., J.D.C. Cartland, and S.S. Flint 1990 Pediatrician participation in Medicaid: 1978 to 1989. Pediatrics 85:567–577.