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1. Children with special needs should be given greater attention and help than insurance coverage alone can provide. This group includes a wide variety of children: those with chronic illnessesand disabilities and other special health needs, those living in poverty, those at risk for a variety of social problems, and adolescents at par ticular risk of unintendedpregnancy.For thesechildren, even more than for children in general, integration of health care with education and other community services is vital. Most European nations provide direct financial support in the form of hard currency, not coupons or other similar substitutes, to such children and their fam ilies.

2. Community-based preventive careâ€”including iden tification of children, adolescents, and families with spe cial needs; their integration into the community; and the coordination of health, education, and social services within a communityâ€”should be available to all children in the United States.

3. Such preventive care should be mediated by an empowering agent, a professional who assists families in finding their own skills and in taking care of their own needs, rather than one whose efforts take responsibility

away from families. The British health visitor seems to more clearly represent such an agent than do the case managers, care coordinators, and other individuals who perform similar services in the United States.

4. Improved generic systems, possibly mediated through expanded Public Law 99â€”457activities, should track all children in the United States, without means testing or other exceptions.

5. A communications network should link existing services, both within and among communities, many of which have substantial capacity.

6. The regionalized programs and services that are needed in the United States should emphasize a decen tralized model of regionalization.

7. Various approaches, eg, expansion of the Title V program or revitalization of public health departments at the community level, should be explored before major responsibility for establishing the infrastructure neces sary to safeguard the health of US children is assigned.

8. Health education should receive far more attention than it does in the United States, because greater public knowledge is critical to building a longitudinal framework in this country.

9. The relatively small contribution of child health care costs to the total health care costs of the United Statesâ€”and thus the relatively small impact on total costs of dramatic increases in expenditures on child healthâ€”should be communicated.

The background papers and presentations document causes for concern about the health of children in the United States. Discussions at the conference affirm a zeal to improve supportsand serviceson behalf of children. The international comparisons stimulate thinking on the approaches that are best suited for this country. Voices will be raised that the US must work out its own solutions and that we cannot learn from what other countries are doing. Understandings are firm that every nation's health care systems grow out of unique political, social, and economic traditions, but those systems are not immuta ble. A limited number of strategies are available to help

children and young families. Insofar as the policies that enable those strategies can be clarified, the likelihood of developing the best approaches for this country is im proved. We are grateful for the analysis of policies that prevail in other Western democracies.

One of the impressive aspects of health services for children in the five nations represented here is their differences. Health care financing and provider systems differ markedly; they are not cookie-cutter programs. Those differences present a responsibility to identify themes that are common to the nations with the best records of child health. Such themes deserve careful attention.

The first of the themes is the need for government action. The US has been through a decade of trying market systems featuring deregulation, individual re PEDIATRICS (ISSN 0031 4005). Copyright Â©1990 by the

American Academyof Pediatrics.

Recommendationsof the Workshopon

Childrenwith Special Needs

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sponsibility, and volunteerism. The impression of most analysts is that these approaches have not worked. Im portant indicators of child health have worsened or pre vious favorable trends have slowed. The approach that has worked in the countries represented here has featured an acknowledged responsibility for central government to engage in explicit policy formulation, to finance, or ganize, plan, set standards, and to monitor child health. In all theserespectsgovernmentis regardedasthe solu tion, not the problem. Even with all of these governmen tal endeavors, the implementation of health policies and programs is regarded as a matter for local community responsibility. Regulatory authority, resource distribu tion, and payment mechanisms have been worked out at the highest levels of government. The community level implements a residual obligation for government to serve as the guarantor provider for essential services, even when private or provider systems are extensively utilized. The issue of central government's role in forn@ulating explicit child health policy relates to this country's efforts to formulate health objectives for the nation for the year 2000. Preliminary drafts include no priority for children. Plans call for a priority on infant and maternal health and for a priority on changing sexual behavior. The theme that pervades all of the objectives for the year 2000 is that if society takes care of everybody, of course children will be cared for as well. The record does not support that claim. Experience in this country and abroad indicates that a separate priority for children is required, or they get pushed to the end of the queue.

A second theme emphasizes universal access and par ticipation of children in a defined set of primary com munity-based services. Differences pertain on the sub stance of the servicesâ€”how extensive, how restricted, and how labeledâ€”but universal participation in them is assured, and they are linked consistently with more elab orate care as circumstances require. Paradoxically enough, considering sponsorship of this conference, none of the countries relies on pediatricians for assurances of universal participation in basic primary care. The study countries rely on general practitioners, community clinics staffed by a multidisciplinary team, and health visitors with nursing preparation. None of the countries strives to put every child face to face with a pediatrician except for consultation, for secondary or tertiary care, and cer tainly for the care of children with special needs. Pedia tricians sometimes provide clinic oversight, but they are not ordinarily front-line providers.

The importance of universal participation needs to be emphasized in light of a consideration on population diversity that several speakers emphasized. All of the countries share problems with minority groups and with a spectrum of socioeconomic levels. Poverty has not been eliminated entirely in any of the countries. Through tax benefits and income transfers, other countries do better than the US in reducing poverty among households with children, but a residuum of poor families with children persists. Ways have been found to reach the residual poor with essential health care.

None of the countries is completely homogenous with relation to cultural background and language. Immigra

tions have been extensive among former colonials and foreign workers with diverse languages and cultural tra ditions. These people, too, are reached with health care. Heterogeneity of population complicates delivery of serv ices; the more heterogenous the population and the greater the socioeconomic spread, the more difficult the problems for achieving universality of care. But evidence is abundant from abroad and from US demonstration projects that everyone can be reached. It is a theme which needs emphasis as a part of US national priorities.

The third theme consistent among the study countries is the absence of economic barriers at the point of service delivery. Immediate access is not hindered by means testing. All nations cope with economic constraints on support of health services, but those constraints do not disqualify individual clients at the time services are ren dered. Zeal persists in the US for means testing to make certain that no service is rendered without a qualifying test ascertaining inability to pay. It is one of our greatest obstacles to improving care. The amount of money spent to keep people out of health care systems through means testing and certification must be prodigious. A claim could be made that the savings in money as well as in moral integrity would be enormous if all means testing were to be set aside in favor of universal access and participation in health care.

In considerationthat everynation copeswith budget ary constraints on health care, the programs presented at this conference are impressive for not being expensive. Universal participation of children in health care has not cost a lot of money. But equally impressive is the reali zation that the programs were put in place not because of extensive documentation on cost effectiveness, al though compelling evidence suggests they are cost-effec tive. The programs were implemented out of a value system that cherishes equity in health care. The US preoccupation for excluding people from care and for exercising stringent criteria on cost effectiveness for pre ventive care, as opposed to a loose approach for support of expensive ways of dying, are enormous obstacles to achieving universal and equitable access for children's health care.

A fourth theme, not quite so consistent but impressive in most ofthe countries, is the realization that bill-paying insurance mechanisms, essential as they may be, are not enough. They do not provide a means for developing the organized community infrastructure of services that chil dren require. In addition to client-based insurance fi nancing, ways have been found for financing community services both for routine preventive services and for the more complicated care required by children with special needs. Organized community services require up-front funding; fee-for-service insurance financing will not gen erate provider systems in locales where they are deficient. The need is great whether considering community serv ices that serve all children for preventive care, as happens in Norway and the Netherlands; or whether considering services in selected communities to reach underserved populations, as happens in France, the United Kingdom, and parts of Canada; or whether considering children with special needs in all countries. Organized community

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provider systems are required; they are inadequate in the US. No adequate means for developing them has yet been consistently implemented.

A fifth impressive theme that came up repeatedly is the need for monitoring and tracking systems for children and for children's health. Among the study countries, the diversityofproceduresis asimpressiveasthe consistency with which the task is done: sometimes by computer based punch card systems, as in the Netherlands; some times by enrolling every newborn on a physician's panel as in the United Kingdom; sometimes by notifying health

visitors of a birth; and sometimesby severalof these

procedures. By one means or another, a public health tracking system for children prevails, and no child is lost. Contrasts with the US are stark. A great deal is known about mothers and newborns at the time of delivery, and at the time of school entry; very little is known about them in between. Those children who are fortunate enough to enroll in licensed day care or Head Start are assured of appropriate care, but they represent a small

minority of the preschool-agedchildren who are eligible and in need of those services. Deficient monitoring or tracking systems for young children are associated with persistent health problems: deficient immunization rates, excess deaths from injury, delayed identification of hand icapping conditions. Modem technology can help. Com puterized notification systems and telefax machines for the immediate sharing of records are feasible. Neglected 1- to 5-year-old children in all communities and in all states need to be served by a system that can link them to appropriate health care.

A sixth impressive theme in the study countries is one emphasized in Dr Wagner's opening remark and repeated in nearly all the presentations. Health and health prob lems are addressed broadly and not just through medical care. Examples include programs for alleviating poverty, so well documented in the international comparative studies by Smeeding and Torrey.' Other countries en courage and facilitate parental care of children through paid work leaves and children's allowances. Access to child care and preschools is extensive. The study coun tries have a smaller proportion of mothers in the work force than in the US and fewer of them working full time. Even with those circumstances families have much better access to child care than in the US. Economic circumstances in the US require two incomes for support ofmany families, who then have great difficulty in finding care for their children. Care by extended family members has diminished, as grandmothers increasingly remain in the labor force; makeshift child care arrangements flour ish. New recommendationsfrom the National Academy of Science call for improved and expanded child care provisions in this country. That effort deserves support.

Circumstances for child care are different in the study countries. By 3 or 4 years of age, a majority, if not all children, are enrolled in preschools that are either free of charge or cost only the price of a lunch. For younger children, licensed and certified day care is available, not always sufficient to need, but in relative abundance corn pared to circumstances in the US.

On all of thesethemesconsensusamongdiscussants

was reasonably well established. A seventh theme pro yoked differences concerning the issue of dual systems of care. Agreement might have been reached with more prolonged discussion, but the issue was left open. Concern with the weaknesses of the US health care system dis tracts from the certainty that it works well for most children. Most children in the US are well cared for, and many are served by a generalist pediatrician who super vises comprehensive preventive, curative, and rehabili tative care as required. No responsible policy initiative proposes to interrupt that arrangement. Involving more children in such care would be desirable. But when people ask if all children in need in this country can be placed in that paradigm, the answer is no. It is not feasible sometimes for reasons of provider location and distribu tion, and sometimes for social or cultural reasons. Even if economic barriers are removed, a legitimate question seeks to identify systems of care that can reach all un derserved children. A dilemma is presented when nearly every proposed answer is discredited with the claim that it is unacceptable because it establishes a dual or two tiered system of care. That problem deserves more atten tion than it receives. Surely a nation that cherishes pluralism and choice in health care can manage at least one system with the promise of reaching neglected pop ulations. Few people are attracted to tiers on the basis that one serves the rich and another serves the poor, although that might represent an improvement over the neglect of poor people except at the times of crisis. Dichotomous private and public tiers of care represent an oversimplification. Significant public and private com ponents of care prevail in many of the study countries and the domains blend, as they do in this country. Private physicians may be paid with public funds, and public clinics may be staffed in part by private physicians work ing under contract. Separate preventive/curative tiers prevail in the study countries without a rigidity that disallows a prevention clinic from coping with an in flamed ear.

Curative care is what the US does best. No evidence suggests that natural causes of death among children are higher in the US than in the study countries. Many indicators suggest deficient well child care in the US. Other countries work on the principle that such care is desirable, and they have developed separate public sys tems to assure its availability.

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second tier. That thinking gives sanction to the continued neglect of many people.

Consideration of proxy indicators was a useful ap proach for international comparisons. Data on immuni zations documented the US information gap for the pre school age population. Other countries collect reliable data on immunization rates; US data are out of date and uncertain. The postneonatal mortality proxy highlighted uncertainty about whether intensive care of low birth weight babies delays some deaths that are inevitable, or whether provisions are inadequate for primary care and environmental protection in the postneonatal period. Ar guments are strong in favor of the latter, although both elements may pertain when postneonatal mortality rates are persistently high. In consideration of the proxy on injuries, no discussant made as strong a plea as required on the control of handguns. International comparisons suggest that some differences in death from injury can be traced to disparities in housing, public transportation, and child care. But the overwhelming difference between injury-related mortality in the US and the rest of the world is explained by ready access to lethal weapons. Handgun control has become such a sensitive political issue in the US that it seems nearly insolvable, a formu

Epilogue

Dr Birt Harvey

lation once attached to apologists for slavery. So long as easy access to handguns persists, the US will continue its record of excessive deaths among family members, friends, neighbors, and owners of handguns.

The proxy on children with special needs underscores presently inadequate financing for community programs that assure early developmental screening with linkage to appropriate social, medical, and educational services.

A closing theme of the conference emphasized plural ism in health care that protects diversity and choice but which disallows gaps. Pluralism need not be inconsistent with a social principle that assures universal participation in basic care. Identifying the kind and scope of assured care should not be difficult. Other countries are doing it. The provider systems that reach children can be diverse; but they cannot continue to allow some children to be overlooked.

C. ARDEN MILLER, MD

REFERENCE

1. Smeeding TM, Torrey BB. Poor children in rich countries.

Science. l988;242:873â€”877

This conference has clarified a number of basic issues. If we expectto improvethe healthof our children,we must change our philosophy about social welfare and about looking after children. We have always considered individualism our ideal, and the concept is rooted firmly in our frontier spirit and our system of free enterprise. European thought is oriented more toward interdepend ence, with greater emphasis on the well-being of the group. How we treat our children is influenced heavily by our philosophy, as the responsibility rests with each individual family.

Except in the event of what we define as child abuse, representing a tiny fraction of ineffective and damaging parental behavior, we place very few legal or social limi tations on parents. Children are a national resource, and responsibility for their welfare is shared by every member of society. As Dr Verbrugge has observed, what we need in the United States is more solidarity and less solitari ness, less individuality. This is the direction we must now pursue.

The United States needs a children's policy; our guests

have made this clear. Health care cannot be separated from all the other factors that influence the well-being of children. We have learned about grants that families get at birth, subsidized day care available to all, lengthy parental leave after childbirth, and paid leave when chil dren are sick. We have a long way to go, but rational child health policy is a good start.

Some feel that we must do everything at once to avoid further fragmentation.Barring a revolutionin this coun try, this is simply not possible. We must implement change stepwise, and doing away with existing fragmen tation is one initial target. The needs of children who are treated well in one program may be ignored by another, and children may require a number of different programs to receive adequate care. We need to bring a lot of these different programs together, not only administratively, but also at the point where services are delivered.

Another obvious step is to assure access to care for all children, and there are many more steps that we must take after that. To add the benefit of their experience to our recommendations for change, our guests will present testimony before the House Select Committee on Chil dren, Youth and Families. We will not reach the end of this road for many years, but we have begun taking steps toward improving the health and welfare of the children of our nation.

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