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Chapter Conclusions ant! Recommenclations At the outset, the focus of this study was outreach for prenatal care. The Committee's charge was to determine which outreach techniques most effectively draw women into care early in pregnancy and maintain their participation until delivery. For this study, outreach was defined to include various ways of identifying pregnant women and linking them to prenatal care (casefinding) and services that offer support and assistance to help women remain in care once enrolled (social support). Early deliberations, however, made it clear that outreach could not be studied in isolation and that the Committee's inquiries had to cover the larger maternity care system* within which outreach occurs. At least four considerations led to this expanded scope of study. First, many projects conventionally labeled outreach (that is, programs of casefinding or social support or both) were found, on closer examination, to be actively involved in such problem-solving activities as trying to help women arrange financing for an in-hospital delivery activities that are not included in conventional understandings of outreach. Second, the goals and content of outreach programs are so heavily influenced by the larger systems within which they operate that it would have been difficult, if not useless, to analyze them apart from their surrounding environment. Third, a variety of approaches other than outreach can accomplish the goals of earlier registration in prenatal care and improved continuation in care. *That is, the complicated network of publicly and privately financed services through which women obtain prenatal, labor and delivery, and postpartum care. 135

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136 PRENATAL CARE: REACHING MOTHERS, REACHING INFANTS These activities include reducing financial barriers to care, making certain that system capacity is adequate, and improving the policies and practices that shape prenatal services at the delivery site. Finally, the Committee reviewed the larger maternity care system because it makes little sense to study ways to draw women into care if the system they enter cannot, or will not, be responsive to their needs. Because of this expanded scope of study, many of the recommendations contained in this chapter are directed at the maternity care system as a whole rather than only its outreach component, although specific recommendations on outreach are pre- sented. REVISING THE NATION S MATERNITY CARE SYSTEM: A LONG-TERM GOAL The data and program experience reviewed by the Committee reveal a maternity care system that is fundamentally flawed, fragmented, and overly complex. Unlike many European nations, the United States has no direct, straightforward system for making maternity services easily acces- sible. Although well-insured, affluent women can be reasonably certain of receiving appropriate health care during pregnancy and childbirth, many other women cannot share this expectation. Low-income women, women who are uninsured or underinsured, teenagers, inner-city and rural residents, certain minority group members, and other high-risk popula- tions described earlier in this report are likely to experience significant problems in obtaining necessary maternity services. Securing prenatal services in particular can be especially difficult for these groups, as shown by the data in Chapters 1 and 2; moreover, there is evidence that utilization is actually declining among certain very high-risk groups. Recent efforts to expand eligibility for Medicaid and numerous state and local initiatives to strengthen maternity services may improve use of prenatal care somewhat, but given the modest scale of most initiatives and the magnitude of the problem, major inequities in the use of prenatal services are likely to remain. These data are deeply troubling in light of the value and cost-effectiveness of prenatal care. Achieving major improvements in the maternity care system, particu- larly in the use of prenatal care, will be neither quick nor easy. Significant improvement must begin with a fundamental recognition that pregnancy and childbearing are profoundly important events requiring carefully formulated social policies and supports. We recommend that the nation adopt as a new social norm the principle that all pregnant women not only the affluent" should be provided access to prenatal, labor and delivery, and postpartum services

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CONCLUSIONS AND RECOMMENDATIONS 137 appropriate to their need. Actions in all sectors of society, and clear leaclership from the public sector especially, will be required for this principle to become a clear, explicit, and widely shared value.* A consensus of this nature means that maternity services must be viewed not as a consumer good, available only to women with certain financial and personal assets, but as an essential part of the country's social and health services, comparable to public education easily available, valued, and used by virtually all women. The merit of such social policy is amply supported by data on the effectivenessincluding the cost-effectiveness of prenatal care (see the Introduction). It is also consistent with basic civility and compassion, with the concept of adequate investment in future generations, and with the need to provide special care during a particularly vulnerable phase of life pregnancy and childbirth. All subsequent rec- ommendations in this report are subsumed under this one. We suggest it as a standard against which to measure a wide array of policy sugges- tionsours and others'. Attaining this goal requires major reform in the way maternity services are organized, financed, and provided in this country, particularly for low-income and other high-risk groups. Continuing to make marginal changes in existing programs is unlikely to meet the standard of universal participation that we advocate. Slowly implemented, often small expan- sions in Medicaicl eligibility, brief bursts of publicity about infant mortality and the importance of prenatal care, efforts in a few communities to increase the number of clinics offering prenatal services these actions, while laudable, are too limited, sporadic, and uncoordinated to overcome the pervasive barriers to care detailed in this report. Rather, the current situation dictates more purposeful action: We recommend that the President, members of Congress, and other national leaclers in both the public and private sectors commit them- selves openly and unequivocably to designing a new maternity care system (or systems) dedicated to drawing all women into prenatal care and providing them with an appropriate array of health and social services throughout pregnancy, childbirth ant! the postpartum period. Although a new system might build on existing arrangements, long-term solutions require fundamental reforms, not incremental changes in . . exlstmg programs. Several ways of designing a new system are feasible, once the political will to create one has been mustered. For example, Congress could appoint *Throughout this chapter, major recommendations are bulleted (a) and in bold face; subsidiary recommendations and suggestions that develop a recommendation further are in italics.

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138 PRENATAL CARE: REACHING MOTHERS, REACHING INFANTS a commission of experts knowledgeable about the maternity care system and public policy; a group of experts within the U.S. Department of Health and Human Services could be assembled; Congress could itself develop alternative proposals using existing data and opinions, drawing on the expertise of established congressional committees and such resources as the Office of Technology Assessment and the Congressional Budget Office; or an independent group could be asked for advice. In making this recommendation, the Committee emphasizes that a commitment to enact major reforms must precede the establishment of any commission or other mechanism.* Too often, studies are funded or panels appointed without such a commitment: as a consequence. change mar be postponed or fad! to take place altogether. We urge that the group chosen to work out the specifics of a new system be a technical, expert body charged only with defining the components and costs of a new maternity system, not with describing current problems yet again or with developing the political momentum needed to accomplish major changes. Once the components of the system have been defined, action to implement the recommendations must follow; otherwise, the effort will be futile and may actually be destructive, by raising false hopes among those in need. In recommending a new maternity system, the Committee recognizes that problems of access to maternity care are only part of the larger problem of access to health services generally. It may well be that far-reaching reforms in the overall health care system will overtake the efforts recommended here to improve access to maternity care. For example, the increasing pressures of the AIDS epidemic alone may lead to significant changes in the health care system. Nonetheless, the focus here is on maternity care, as dictated by the Committee's mandate. Although the Committee was not asked to specify the elements of a new system or systems of maternity care, our work over the last 2 years has indicated the principles essential to significant improvement in the use of prenatal services. We presume that these same attributes would also improve the care women receive during childbirth and the postpartum period. We urge that the new system: *This sequence was followed in the early 1980s when the Social Security system was threatened with financial difficulties. Both the President and the Congress recognized that corrective action needed to be taken and appointed the National Commission on Social Security Reform (the "Greenspan Commission") to develop a plan for solving the system's financial problems. The Commission recommended a series of measures in January 1983 and Congress adopted them later that year.

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CONCLUSIONS AND RECOMMENDATIONS 139 accommodate the maternity care needs of all women, not only women in privileged economic or geographic subgroups; embrace the full continuum of maternity services (prenatal, labor and delivery, and postpartum care), erasing the gap that currently exists between systems that provide andfinance prenatal care and those that support carefor childbirth; be closely coordinated with other health services used by women, improving the quality and accessibility of these related services as much as possible; over a uniform, comprehensive package of maternity services that can accommodate variations in individual needs, as suggested by the Select Pane! for the Promotion of Child Health, ~ the American College of Obstetricians and Gynecologists2 and the American Academy of Pediatrics,3 and theforthcoming report of the Public Health Service's Expert Pane! on the Content of Prenatal Care;4 address the liability pressures currently driving providers out of the practice of obstetrics;5 be administered separately from the welfare system; - rely on a wide array of providers, including both physicians and certified nurse-midwives, each of whom may practice in a variety of settings and systems; tee financed adequately; ensure that financing mechanisms support appropriate clinical practices; include a large-scale, sustained program of public information and education about maternity care; support education and training of providers to deepen their understanding both of the obstacles women can face in securing prenatal care and their perceptions of care once enrolled; include reliable, accurate means of collecting data on unmet maternity care needs and on the performance of the new system or systems, at local, state, and national levels; and specify a structure of accountability and responsibility under the control of a federal agency, with state agencies assuming leadership. Many of these issues, such as the urgent need to address liability pressures, are taken up again and in more detail in later sections presenting the Committee's short-term recommendations. Here, we wish to empha- size two in particular. First, the separation of maternity care financing from the welfare system is emerging as a key element of initiatives to improve use of prenatal care among poor women, as demonstrated by recent Medicaid reforms (Chapter 29. Although Medicaicl and welfare obviously need to be coordinated, the links between the two programs have had the unfortunate effect of attaching a welfare "stigma" to a health care financing

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140 PRENATAL CARE: REACHING MOTHERS, REACHING INFANTS program. Therefore, the notion of separating the programs administra- tively is important. Second, we emphasize the need for national standards of maternity care. Increased communications, rapid dissemination of new information and technologies, and increased use of national standards in malpractice suits make it ever more unreasonable for maternity care to differ widely among geographic or socioeconomic groups, although care must always accommodate variations in individual need. It is also apparent that a deeper national commitment to family planning services and education should accompany major revisions in the maternity care system. Women with unintended pregnancies are particularly likely to delay seeking prenatal care and more than half of all pregnancies in the United States are unplanned (Chapter 2~. Therefore, reducing rates of unplanned pregnancy could lead to lower rates of late entry into prenatal care. The Committee recognizes that progress in this direction is compli- cated and that a large literature exists on both the antecedents of unintended pregnancy and ways to reduce it. Nonetheless, a firm commit- ment to extencting family planning services is an obvious, essential first step, particularly for those populations most at risk of unintended pregnancy (and, subsequently, poor participation in prenatal care)- low-income women, teenagers, and minorities. Such services should be easily available in numerous settings, should be provided for free or at very low cost, and should be carefully linked to prenatal services (as discussed in more detail below). High-quality, widely disseminated public informa- tion and education about family planning is also important and should be coordinated with messages about prenatal care. In fact, it might be possible to develop information and education campaigns around broad issues of reproductive responsibility and health, encompassing both family plan- ning and prenatal care. DEVELOPING A COMPREHENSIVE, MULTIFACTED PROGRAM: A SHORT TERM GOAL While consensus grows on the need for a major restructuring of the maternity care system in the United States, and while the specifics of a new approach are being defined, several more immediate steps should be taken to increase participation in prenatal care. Although some of them are quite far-reaching, they all derive from and are based on the existing maternity care system. As such, they differ fundamentally from our recommendation in the preceding section, which argues for a more profound and complete reorganization of this health care field. We recommend that more immediate efforts to increase participation in prenatal care emphasize four goals: eliminating financial barriers to

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CONCLUSIONS AND RECOMMENDATIONS 141 care, making certain that the capacity of the system is adequate, improving the policies and practices that shape prenatal services at the site where they are provided, and increasing public information about prenatal care. The Committee has concluded that these four reforms promise significant improvement in the use of prenatal care. The first of the four eliminating financial barriers is undoubtedly the most impor- tant. Indeed, we believe that if this single barrier were removed, many of the other problems noted throughout this report would decrease appreciably. Ample data indicate, however, that it is not only financial problems that keep women out of care. Other problems can impede access as well and also require attention. Thus, removing financial barriers should be viewed as a necessary but not entirely sufficient- step in improving the use of prenatal care. We urge that leadership for this comprehensive approach come from the federal government. Individual states and communities should not have to both develop and fund programs to improve access to care, even though some states have been particularly innovative in doing soby offering health insurance to those with inadequate or absent coverage, for example, or by constructing new programs to supplement Medicaid and federal funds for maternal and child health. Leaving the entire task of program innovation and support up to the states is certainly consistent with political trends in the 1980s, but the federal government should nonethe- less play a stronger role. We recommend that the federal government provide increased lead- ership, financial support, and incentives to help states and communities meet the four goals we advocate. In a parallel effort, states should accept the responsibility for ensuring that prenatal care is genuinely available to all pregnant women in the state, relying on federal assistance as needed in meeting this responsibility. More specifically, we urge a stronger federal role in providing funds to state and local agencies in amounts sufficient to remove financial barriers to prenatal care (through such channels as the Maternal and Child Health Services Block Grant and other grant programs) and in providing prompt, high-quality technical consultation to the states on clinical, administrative, and organizational problems that can impede the extension of prenatal services. The federal government should also take more leadership in defining a mode! of prenatal services for use in public facilities providing maternity care; and supporting related training and research. States should assume direct responsibility for ensuring that all women within the state have full access to prenatal services. Backed by adequate

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42 PRENATAL CARE: REACHING MOTHERS, REACHING INFANTS federal funds, support, and consultation, the states should invest generous amounts of time and money in extending this basic health service. This would involve states more deeply in assessing unmet needs by surveying existing prenatal services and identifying the localities and populations for which they are inadequate; contracting with various providers to fill gaps in services; and in some instances, providing prenatal services directly, through such facilities as health department clinics. In addition, the Committee suggests that each state pass legislation making the maternal and child health agency of the state health department responsible for ensuring that prenatal services are reasonably available and accessible in every community. FINANCIAL BARRIERS Removing financial barriers to care is the cornerstone of the compre- hensive program we recommend. Surveys of pregnant women and of maternity care providers, and program experience over many years uniformly demonstrate the importance of economic circumstance espe- cially the presence or absence of insurancein predicting use of prenatal services. Although expansions of Medicaid and creative state initiatives have made some progress recently in lowering financial barriers to care, the pace of progress needs to accelerate, and remaining financial obstacles need to be removed. Accordingly, as a critical first step: We recommend that top priority be given to eliminating financial barriers to prenatal care. This broad recommendation has specific implications for all the major networks, public and private, that underwrite prenatal care. For the Medicaid program: We recommend that the federal government require all states to provide Medicaid coverage of prenatal care for pregnant women with incomes up to 185 percent of the federal poverty level,* to be followed by eligibility expansions beyond 185 percent to cover more uninsured or underinsured women. Detailed discussions of how states and the federal government can accomplish this and other expansions in Medicaid eligibility for pregnant women and other groups are contained in Medicaid Options: State Oppor- tunities and Strategies for Expanding Eligibility, prepared by the American Hospital Association.6 *This is currently only an option for states (Chapter 2).

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CONCLUSIONS AND RECOMMENDATIONS 143 For the various federal grant programs (particularly the Maternal and Child Health Services Block Grant and the programs funding Community Health Centers, Rural Health Centers, and Migrant Health Centers) and for state and local health departments: We recommend that federal and state authorities provide these service systems with su.fficientfunds to o.fferfree or reduced-cost prenatal care without delay to aZZ pregnant women requesting it in these settings. Meeting this broad objective will require, among other things, more sophisticated measurement of unmet need in the areas served by these publicly financed clinics. For private insurance, where coverage of prenatal care can be inadequate: We recommend that Congress and state governments act to expand and strengthen private insurance coverage of maternity services. This goal could be reached in various ways. For example, Congress could mandate that all employers covered by the Fair Labor Standards Act provide a defined package of maternity services to employees and their dependents. Congress could also repeal the exemption contained in the Pregnancy Discrimination Act allowing employers of fewer than 15 persons to provide no pregnancy coverage. Congress could also modify the Employee Retirement Income Security Act (ERISA) in order to permit states to require that self-funded employer health plans provide maternity benefits; more than half of employer-provided health insurance plans are self-funded and as such are exempt from state insurance regulation through ERISA. We also urge purchasers of private insurance to pressfor improved coverage of prenatal care through labor union negotiations, switching to more comprehen- sive plans, and similar consumer-based actions. Private insurance companies themselves should take the initiative of offering comprehensive coverage of prenatal care as part of their basic insurance packages. In all these actions, attention should be focused on eliminating such gaps in coverage as waiting periods for prenatal benefits to begin, dependent coverage that fails to include prenatal services, limited insur- ance for part-time or seasonally employed individuals, and burdensome copayments and deductibles for maternity services (Chapter 21.7 INADEQUATE SYSTEM CAPACITY Urging all pregnant women to begin prenatal care early is a hollow message if prenatal clinics are nonexistentor so backed up as to be

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44 PRENATAL CARE: REACHING MOTHERS, REACHING INFANTS nonexistent in practical terror if private providers are lacking or unwilling to accept low-income patients. Yet the Committee uncovered considerable evidence that capacity is inadequate in various communities, particularly for poor women (Chapter 2~. Accordingly, as a companion initiative to reducing financial barriers: We recommend that public and private leaclers designing policies to draw pregnant women into prenatal care make certain that prenatal services are plentiful enough in a community to enable all women to secure appointments within 2 weeks with providers close to their homes. Methods for achieving this objective will vary across states and com- munities, but several approaches will probably be required simultaneously. We recommend: more careful assessment at the community level of existing service capacity and of the areas and groups for whom capacity is inadequate; state leadership in this area is particuZarZy appropriate, as noted above; more generous financing of clinic systems, in particular, to allow them to meet demand, also noted above; resolution of the malpractice crisis in obstetrics; increased Medicaid reimbursement for maternity care offered by private providers in order to increase the number of physicians who accept Medicaid patients; restoration of the National Health Service Corps and equivalent state programs to help develop an adequate pool of providers for medically underserved areas; expansion of the variety of settings in which prenatal care is offered; school-based health clinics in particular can help bring prenatal care to adolescents; increased use of certified nurse-midwives (CNMs) and obstetrical nurse- practitioners; state laws and physicians themselves shouts support hospital privileges for CNMs and collaboration between physicians and nurse-mid- wives or nurse-practitioners; eventually, large interstate variations in the laws governing the use of such midZeve! practitioners should be eliminated; and leadership by the professional societies of obstetric care providers to increase the involvement of private physicians in the care of indigent women. (For example, private sector leaders should work coliaborativeZy with Medicaid officials and leaders of maternal and child health agencies to raise reimbursement levels for maternity care, to solve administrative problems in the Medicaid program, and to develop proposals for providing physicians with incentives to serve poor women. National professional organizations snooze urge local ones to focus on problems of underserved women).

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CONCLUSIONS AND RECOMMENDATIONS 145 The last point is particularly important. Raising Medicaid fees and addressing the malpractice problem in obstetrics are undoubtedly neces- sary to enhance private sector involvement in indigent care, but leadership from the professional societies is also critical. The work of the Commit- tee on Underserved Women of the American College of Obstetricians and Gynecologists is a useful step in this regard. Other national, state, and local organizations of obstetric care providers should establish . . slm1 ar groups. With regard to the specific issue of malpractice, the Committee urges public and private groups with expertise in this area to develop without delay a range of possible solutions to the current situation, perhaps experimenting with various approaches in different states. One interesting proposal is to provide sufficient funds to public agencies for them to absorb the costs of malpractice insurance for providers (MDs, CNMs, and others) who care for significant numbers of indigent women. INSTITUTIONAL ORGANIZATION, PRACTICES, AND ATMOSPHERE However well-organized the maternity care system appears at the state or national level, a pregnant woman experiences and judges it in her individual community, in a specific clinic or office, and with a particular provider. In reviewing initiatives to increase the early use of prenatal care, the Committee has been repeatedly impressed by the success of programs that emphasize internal institutional modification as a means of drawing more women into care and sustaining their participation. Therefore, in addition to addressing financial barriers and problems of limited capacity: We recommend that those responsible for providing prenatal services periodically review and revise procedures to make certain that access is easy and prompt, bureaucratic requirements minimal, and the atmosphere welcoming. Equally important, services should be pro- vided to encourage women to continue care; follow-up of missed appointments should be routine, and additional social supports should be available where needed. In this context, the Medicaid program requires special emphasis. However generous the eligibility expansions described earlier, little is gained if the task of applying for and maintaining Medicaid coverage is so difficult, complicated, and time-consuming that prompt, continuous par- ticipation in prenatal care is virtually impossible for all but the most socially organized and determined women. Accorclingly: We recommend that states shorten and simplify the process of obtaining Medicaid coverage for prenatal services and that, once a woman is enrolled,

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52 PRENATAL CARE: REACHING MOTHER, ACHING INFANTS 2. television and, in particular, radio spots to announce specific services, coordinated with posters displayed in the mass transit system; 3. efforts to encourage current program participants to recruit additional participants from their friends, neighbors, ant! relatives; 4. strong referral ties between the prenatal program and a variety of other systems in which pregnant women at risk for insufficient care may be found: family planning clinics, schools, housing programs, VVIC agencies, welfare and unemployment offices, churches and community service groups, shelters for the homeless, the police and corrections systems, substance-abuse programs and treatment centers, and other health and social service networks; and S. outreach workers who work in carefully defined target areas and seek clients among welI-defined target populations. Whatever the method used, casefinding should be directed toward high- risk groups and areas. This requires that program leaders pinpoint the sociodemographic characteristics and geographic locations of women who obtain insufficient prenatal care. The materials in Chapter 1 can help to define target groups, although the data discussed there are primarily national- states and communities need more detailed information on their own populations. Chapter 2 also presents information that can help to define target groups. Data from both chapters suggest that several populations are likely candidates for targeted casefinding (as they are for focused campaigns of public information): very young teenagers, low-income multiparous teenagers, women over 35 with several children, substance-abusing women and homeless women, recent immigrants, certain high-risk minority groups, and very low-income women in both inner-city and rural areas. The fifth method highlighted above, use of outreach workers, requires comment. Much of the program data assembled by the Committee suggest that the effectiveness of these workers is limited. We suspect, though, that when such workers are used only in a carefully targeted way in very low-income housing projects, for example, or other areas with high concentrations of women at risk for inadequate prenatal care, their effectiveness may be greater than some of the program data suggest. The personal touch they offer to women whose lives are often in chaos may be just what is needed, and the poorest inner cities and rural areas of America may need more of them. We emphasize again, though, the importance of their work being focused on areas of greatest need only, given the expense, labor-intensity, and occasional dangers of the job. A final note on outreach workers. It is not uncommon for communities to have outreach workers from several different agencies working in a single area. Representatives from child abuse and neglect services, pediat-

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CONCLUSIONS AND RECOMMENDATIONS 153 rics, social services, sanitation, housing, and rat and poison control can all be knocking on the same doors. The potential for fear, suspicion, and lack of efficiency that such a scenario suggests {cads us to a simple suggestion: We recommend that communities experiment with multipurpose outreach workers in an effort to increase efficiency, enhance the receptivity of neigh- borhood residents, and, perhaps, increase the effectiveness of such workers. Evaluation should accompany welI-designed trials of this approach and, if they are found useful, results should be widely disseminated. We recognize a historical cycle here. Over the years, single-purpose and multipurpose outreach move in and out of style. In the early days of the War on Poverty, for example, the multiservice mode! was ascendant; in the 1980s it is rare. Our sense is that the pendulum has swung too far in the single-purpose direction and that a change is in order. The Committee also calls particular attention to casefinding through closer links between pregnancy testing and prenatal services. A major opportunity to enroll pregnant women in prenatal care promptly is missed each time a positive pregnancy test is not accompanied by an appointment for prenatal services, if appropriate. Similarly, a negative pregnancy test signals that referral to family planning or even infertility services may be in order. We recommend that pregnancy-testing services and prenatal care programs develop stronger referral ties, including the ability to make appointments for prenatal care at the pregnancy testing site. Missed prenatal appointments require vigorous follow-up. In this context, we also urge that, given teenagers' poor use of prenatal care (especially teenagers who already have one or more children), schools include the availability of pregnancy testing in their health services and make special efforts to help pregnant teenagers obtain prenatal care. Health clinics based in schools are increasingly common and provide a natural setting for this function. Similarly, pediatricians, family practitioners, and others caring for families with young children can help in the task of casefinding. In Chapter l, the strong association between higher birth order and poor use of prenatal care was noted; young, poor, multiparous women in particular form an exceedingly high-risk group. This finding supports an additional suggestion: We recommend that health care providers in touch with women who have young childrenparticularly Zow-income teenagers with young children periodically raise the topics offamity planning and child spacing. If additional children are planned or already on the way, the topic of prenatal care should

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54 PRENATAL CARE: REACHING MOTHERS, REACHING INFANTS be raised. Specific information on where and how to obtain prenatal care should be easily available in these settings. We also urge that careful thought be given to the mechanics of linking prenatal services more directly to pregnancy testing and pediatric services. In particular, referral systems must ensure that patient confidentiality and sensitivity are respected. To help develop and disseminate information about this method of casefinding, it would be useful to describe and evaluate alternative approaches. On a more general level, we also emphasize that casefinding by whatever methodcan be time-consuming, expensive, and difficult to conduct. For example, high-risk groups who remain outside the maternity care system may resist efforts to draw them into care and be difficult to engage; casefinding through outreach workers requires a significant investment in recruitment, training, support, and supervision; developing appealing placards for subways and buses often requires careful graphic design, market research and premarket-testing, and extensive negotiations with local transit authorities. Yet it is our impression that in planning and raising funds for prenatal care programs, the casefinding function is often shortchanged. We recommend that those responsible for planning and funding prenatal programs recognize explicitly that casefinding is not simple and may be costly. Program planning and budgeting should provide adequate, realistic supportfor casefinding. SOCIAL SUPPORT Ample data show that with the care and attention of a single person or two (a patient advocate, a case manager, a granny, or whatever), high-risk women can be helped to obtain adequate prenatal care and to secure the many ancillary services they need (see Appendix A). Were the four recommendations for improving the maternity system implemented, the need for social support might decrease, because women would not need as much help arranging for care. Even in a well- functioning system of prenatal services, however, Group C (see Figure 5.1) would remain, requiring concentrated support and assistance. Accord- ingly: We recommend that programs providing prenatal services to high- risk, often low-income groups include social support services to help maintain participation in care and arrange for additional services as needed. Home visiting is an important form of social support and should be available in programs caring for high-risk women.

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CONCLUSIONS AND RECOMMENDATIONS 155 Sometimes the primary obstetric care provider fills this social support role; sometimes the task is delegated to others. Whatever the arrangement, this function needs to be adequately financed (and, in particular, reim- bursed through public and private insurance), as it, like casefinding, can be time-consuming and therefore expensive. However, having made this general point, we are reluctant to urge that "case management," as it is currently being used in the administration of the Medicaid program, be widely applied. As a recent survey of state Medicaid directors noted, "Case management lacks a precise conceptual or operational definition. In the absence of a definition, case management typically describes a range of activities that can vary from routine, minimally professional referral services, to primary nursing, to compre- hensive care plan development, oversight, and monitoring."8 This situa- tion leads to an additional suggestion: We recommend that the federal government, in partnership with states, providers, consumers, and public and private insurers, develop clear standards and performance criterinfor thefunction of case management. These standards and criteria must be unequivocally oriented toward women's health and social needs. Once developed, they should be adopted in a wide range of prenatal settings, particularly those caring for significant numbers of high-risk women, and al! payment systems should support such care. In concluding these sections on casefinding and social support, the Committee again stresses that they do not substitute for the basic system repairs outlined earlier. Program leaders and policymakers concerned with increasing use of prenatal care should concentrate first and foremost on financial and institutional issues and should not be seduced into thinking that more limited measures such as hotlines or outreach workers will solve the problem. Instituting an outreach program may appear less difficult and expensive than fundamental system reform; it may also have considerable public relations value. But the Committee strongly suggests that outreach should be aimed only at carefully defined high-risk groups and that it should be an adjunct to a well-functioning system that is easily accessible to the vast majority of pregnant women. MANAGEMENT AND EVALUATION The Committee's study of programs yielded several observations about management and evaluation (Chapter 41. On the basis of these findings: We recommend that programs to improve participation in prenatal care invest generously in planning and assessment of needs. Doing so will require a deeper appreciation, among funders in particular, of the

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156 PRENATAL CARE: REACHING MOTHERS, REACHING INFANTS time needed for responsible, intelligent program design and planning. Substantial improvements in the use of prenatal care (or in other measures of outcome such as low birthweight or infant mortality) should not be expected too soon. Issues to be considered in basic planning and needs assessment include in-depth reviews of existing maternity services, provider practices, and attitudes; public and private health insurance coverage in the target state or community; the views of local women regarding existing maternity services; careful definition of the target populations, of local barriers to prenatal care, of existing community services, and of relevant historical and political realities; market research and premarket testing of materials (where applicable); design and testing of management information systems or other mechanisms for providing basic program data (who is being served, how staff and other resources are being used, program changes over time, and so on); and consideration of whether a formal evaluation should be included, and, if so, what type. Far too many of the programs reviewed by the Committee were deficient in conducting these basic functions, even programs receiving public funds and in existence for many years. Many programs came into existence quite quicklyoften because of the sudden availability of money or opportu- ni~and were in business before a number of important preliminary steps could be taken. Funders, policymakers, and particularly politicians need to understand that these programs like human services generally cannot be organized in a hurried, slipshod manner; information needed for planning takes time to gather and analyze. The Committee noted a reluctance to view investments in prenatal care programs as long-term commitments whose impact should not be antici- pated too soon. Developing new statewide networks of clinics, changing community views about the value of a service such as prenatal care, encouraging more private physicians to care for low-income patients, convincing a community that a certain care facility is now receptive to immigrant women, or developing trust in a particular community worker are all difficult tasks that take generous amounts of time. We were distressed by the number of programs that felt under pressure to show "results,' (such as a dramatic increase in first-trimester enrollment in prenatal care or a marked decrease in low birthweight) in a year or so, sometimes less. Common sense alone suggests that many of the types of programs outlined in the Appendix take several years to develop into smoothly functioning services and sometimes longer to show results, if any. Moreover, no single approach (such as a media campaign or a modest expansion in Medicaid eligibility) should be under pressure to correct such complicated problems as infant mortality or Tow birthweight.

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CONCLUSIONS AND RECOMMENDATIONS With regard to program evaluation: 157 We recommend that early in a program's course its directors decicle whether it is to be primarily a service program (with data collected mainly to help in program development and monitoring) or whether it is also to test an idea in the field. The latter type requires ample funding if the evaluation is to be sound; it also requires sophisticated systems for data collection and experts in program evaluation resources that must be built into the program from the outset. This recommendation carries the implicit message that although all programs should be carefully managed, not all should be evaluated. Meaningful evaluation is often expensive, drawing resources from other activities that may be more urgent; moreover, it requires control or comparison groups, which many operating programs cannot establish. It requires significant technical skill and expertise, as well as adequate investments in research design, computer software, and data entry and analysis. For programs that choose to include a strong evaluation component, specific consideration should be given to qualitative versus quantitative approaches and to the possibility of randomized trials and alternative designs that attempt to overcome selection bias. We also note that a higher quality of effort is needed than that exhibited by most of the programs. reviewed. Indeed, the Committee found that significant amounts of time and money are being wasted on evaluation studies that are so flawed methodologically as to be almost useless. RESEARCH The Committee found a number of topics that merit research. Before listing them, however, we assert that no further research should be conducted to show the importance of financial and institutional barriers in the poor use of prenatal care. More than enough data documenting these relationships exist, even if public policy addressing these problems is inadequate. We do urge, however, that any community designing pro- grams to increase early use of prenatal care carefully assess the extent of financial barriers, inadequate system capacity, and inhospitable institu- tional practices. For example, in many communities only anecdotal information exists regarding the availability of prenatal services: whether certain clinics are overloaded, and if so, to what extent; the fees at area clinics; and so forth. Obtaining such basic information should be the first order of business in designing prenatal programs.. We are reluctant to recommend extensive research on the relative effectiveness of various casefinding activities, i.e., assessing the client-yield

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158 PRENATAL CARE: REACHING MOTHERS, REACHING INFANTS of community workers versus hotlines or financial incentives. These activities are usually so intertwined with other variables in the system that methodologically sound studies of their impact would be virtually impos- sible to design. Moreover, given the major role that financial and institu- tional barriers play in determining use of prenatal care, it seems almost diversionary to study outreach techniques rather than to improve the basic prenatal care system. With this context in mind: We recommend that in communities where financial! and institutional obstacles to care have been significantly lowered, research be undertaken on several topics: 1. Why do some pregnant women register lateor not at all for prenatal care even when financial and institutional barriers are ostensi- bly absent? In particular, what are the emotional and attitudinal factors that limit participation in care? 2. How can the content of prenatal care be revised to encourage women to seek such care early in pregnancy? 3. What casefinding techniques are most helpful in identifying very high-risk groups (such as low-income multiparous teenagers) and link- ing them to prenatal services? 4. What are the costs associated with various forms of casefinding and social support? S. What are the most effective ways to forge links between physi- cians in private practice and community agencies providing the ancillary health and social services that high-risk women often need? 6. How is access to maternity services being affected by such recent developments as the decreased ability of hospitals to finance care for indigent patients through cost-shifting, the increase in corporate own- ership of hospitals, the gradual expansion of the DRG (diagnosis-related groups) system beyond the Medicare program, and the increasing profit orientation of the health care sector generally? With regard to the first topic, it would be helpful if researchers could use similar theoretical frameworks and lists of barriers when interviewing women. As Chapter 3 shows, many questionnaires have been developed, but their diversity hampers efforts to synthesize findings. One particular issue that research of this type might probe is why some women who are clearly pleased to be pregnant seek pregnancy confirmation early but then do not arrange for prenatal care, even in areas where the maternity care system is functioning well. The second topic suggests that early enrollment in prenatal services might increase if such care were more clearly directed to major issues in the first trimester of pregnancy. These include: the steps women can take

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CONCLUSIONS AND RECOMMENDATIONS 159 to protect the health and development of the fetus (such as avoiding x-rays, alcohol and other drugs); the discomforts of early pregnancy (such as nausea, worries about "getting fat," and changing personal relationships occasioned by the pregnancy); and the ambivalence or negative feelings that some women experience when first learning they are pregnant. If prenatal care gave more emphasis to these first trimester issues, and if women better understood that prenatal care was helpful and important from conception onward, use of this health service might well increase. The third topic should include such questions as: (l) What is the relative effectiveness of such case-finding techniques as community can- vassing via outreach workers, telephone canvassing, hotlines, public service announcements, and/or provision of various incentives? Do some approaches work better in some settings and for some target groups? (2) How can referral [inks between prenatal care and other services in which high-risk women participate best be developed and maintained? (3) What institutional homes (health departments, social services agencies, free- standing institutions) are best suited to various outreach activities? The fourth topiccostsmerits emphasis. With very few exceptions- the Central Harlem Outreach Program of New York City being the shining example the programs reviewed by the Committee had little or no data linking program costs to client outcomes. To compete for future support and to provide more accountability, such data need to be collected. The fifth topic addresses the problem of private practitioners being isolated from many community-based agencies that provide the supple- mentary services some of their patients need, such as WIC and substance abuse treatment. Research in this area should proceed with the full involvement of private practitioners so that conclusions will be acceptable to them and relevant to their practices. Our sixth and final suggestion for research simply acknowledges that fact that current changes in the health care system may be decreasing access to prenatal care. If so, such influences need to be carefully described and quantified, and policymakers should be alerted to the findings of such investigations. A NOTE TO FUNDERS We conclude with some observations directed to those who fund prenatal services: public agencies, legislative bodies, and private founda- tions and voluntary groups. Many of these points have been covered elsewhere under various headings. We collect and reiterate them here for emphasis.

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160 PRENATAL CARE: REACHING MOTHERS, REACHING INFANTS Over the years, private and public institutions have funded a variety of demonstration and research programs in the general area of prenatal care for low-income groups. The Committee has reviewed many of these programs and has concluded that at least three problems cloud the relationship between these programs and their sponsors. First, the absence of ream and consistent funding of prenatal care programs for {ow-income groups often forces program directors to ask foundations or government for research and demonstration funds that in fact are usedout of necessity to subsidize basic program services. It is for this reason, perhaps, that the Committee found very little real innovation or research in the areas of delivery of prenatal care or outreach for low-income groups. In the Committee's view, fostering high-quality research on complicated issues of access to care will require government, foundations, and program directors to give up the fiction of subsidizing direct services through research grants. Second, the Committee found that many research and demonstration An. . . ~ 1 ~ ~ - ~ 1 ~ . . ~ 1 - programs are funded by foundations and government for 2 or 3 years. These short funding cycles have at least two negative consequences. First, they require program leaders to spend large amounts of time searching for funds, responding rapidly to competitive grant announcements, preparing numerous funding applications, lobbying state legislatures and other public groups for support, and so on. Coupled with often burdensome reporting requirements, the struggle to maintain funding has become debilitating and frustrating. Second, the short cycles carry the implicit message that programs must implement, evaluate, and show results within 2 or 3 years. Program directors are aware that their funding may depend upon their ability to provide these results quickly. Such a process suggests a lack of understanding of the basic facts of organiza- tional sociology. To implement and institutionalize change in any organization or client population requires considerable time. The Com- mittee suggests that genuine innovation and evaluation cannot be accomplished in much less than S years and that to expect valid results in less time is naive. Third, although both government and foundations have regularly funded demonstration projects in the area of prenatal care for poor women, often with considerable public fanfare, support of successful programs over many years is less evident. The Committee suggests that foundations and government might more usefully serve this area of health care by working together, in a deliberate and planned fashion, to ensure that programs whose value and effectiveness have been proven are maintained "when the grant runs out.', A conscious plan for moving innovation into the mainstream would allow those responsible for health care to use their energies in more constructive and innovative ways. It

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CONCLUSIONS AND RECOMMENDATIONS 161 would also enable useful programs to continue when the next social priority comes along claiming attention and funds. SUMMARY In the long run, the best prospects for improving use of prenatal care- and reversing current declineslie in reorganizing the nation's maternity care system. Although a new system may include some elements of the existing one, the Committee specifically recommends against the current practice of making incremental changes in programs already in place; instead it argues for fundamental reform. Several ways are available for designing the specific components of a new system, but no such work should proceed until the nation's leaders first make a commitment to enact substantial changes. A deeper commitment to family planning services and education should accompany improvements in the maternity care system. In the short term, we urge strengthening existing systems through which women secure prenatal services. This includes simultaneous actions to remove financial barriers to care, make certain that basic system capacity is adequate for all women, improve the policies and practices that shape prenatal services at the delivery site, and increase public information and education about prenatal care. Federal leadership of this four-part program is essential, supplemented by state action to ensure the availabil- ity of prenatal services to all residents. Even if all four system changes were implemented, there would still be some women without sufficient care because of extreme social isolation, youth, fear or denial, drug addiction, cultural factors, or other reasons. For these women, there is a clear need for casefinding and social support to locate and enroll them in prenatal services and to encourage continuation in care once it is begun. These outreach services, built onto a well- designed, highly accessible system of prenatal services, can help draw the most hard-to-reach women into care. Unfortunately, though, outreach is often undertaken without first making certain that the basic maternity care system is accessible and responsive to women's needs. Too often, communities organize outreach to help women over and around major obstacles to care rather than removing the obstacles themselves. Thus, the Committee specifically urges that outreach be funded only when linked to a well-functioning system of prenatal services or, at a minimum, when it is part of a comprehensive plan that emphasizes four areas noted above. To fund outreach in isolation and hope that it alone will accomplish major improvements in the use of prenatal services is naive and wasteful.

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162 PRENATAL CARE: REACHING MOTHERS, REACHING INFANTS In support of this general view, the Committee also makes a number of recommendations regarding program management, evaluation, and re- search. The Committee concludes that not all programs should have to muster the funds and expertise to conduct meaningful evaluation. For those that choose to do so, a higher quality of effort is needed than that exhibited by most of the programs reviewed. With regard to research, the Committee specifically urges that no more research be conducted to demonstrate the importance of financial and other institutional barriers to care. We do, however, suggest six specific research topics and recommend that the current practice of securing funds for services under the guise of research cease. REFERENCES AND NOTES 1. Select Panel for the Promotion of Health. Better Health for Our Children: A National Strategy, Vol. 1. DHHS Pub. No. (PHS) 79-55071. Washington, D.C.: Government Printing Office, 1981. 2. American College of Obstetricians and Gynecologists. Standards of Obstetric- Gynecologic Services, 6th ed. Washington, D.C., 1985. 3. American Academy of Pediatrics and American College of Obstetricians and Gynecologists. Guidelines for Perinatal Care. Washington, D.C., 1983. 4. A final report of the Expert Panel on the Content of Prenatal Care is expected early in 1989. 5. The Institute of Medicine has a study under way at present on the effects of medical liability on the delivery of maternal and child health care. A final report is expected in early 1989. 6. American Hospital Association. Medicaid Options: State Opportunities and Strate- gies for Expanding Eligibility. Chicago, 1987. 7. Additional observations on private sector leadership in improving insurance coverage for maternity services are in National Commission to Prevent Infant Mortality. The Private Sector's Role in Reducing Infant Mortality. Washington, D.C., 1988. 8. Luehrs I. Issue Brief: Case Management as an Optional Medicaid Service. Washing- ton, D.C.: Health Policy Studies, National Governors' Association, September 1986, p. 3.