-$he $rgeon Gem-d's Workshop on:

--
M.zernal
Infant
Health

S. DEPARTMENT OF HEALTH AND HUMAN SERVICES~Publk Health sBvico.Offic4 of the Assistant Secretary for Health


"Every woman should have quality prenatal care during the
first three months of pregnancy. "
     Julius B. Richmond

Surgeon General of the United States

ii


Preface

The Surgeon General's Workshop on Maternal and Infant Health was
held because of our abiding interest in improving the health of this Nation's
children. We can take great satisfaction with the recent decline in infant
mortality which has been substantial; however, we may once again reach a
plateau similar to that which occurred between 1955 and 1965, if we do not
target our resources effectively. In addition, several population groups in
the United States continue to have a significantly higher infant mortality
and morbidity. These disparaties require very careful attention if we, as a
Nation, can reduce and eliminate them.

The participants at this Surgeon General's Workshop were called on to
develop recommendations for a social strategy to insure that all of our
knowledge is being applied fully in the service of better health for parents
and their infants and to help target our efforts, especially for those who re-
main vulnerable-the unserved and the underserved.fi

   B. Richmond, M.D.
Surgeon General

. . .
111


Planning Committee

Planning Commitee for the Surgeon General's Workshop On Maternal and
Infant Health

CHAIRMAN         Ezra C. Davidson, Jr., M.D.

COMMITTEE MEMBERS  Kathryn Barnard, Ph.D.
              Alfred Brann, M.D.
              Stanley C. Graven, M.D.
              Ruby Hearn, Ph.D.
              Arthur Salisbury, M.D.

Federal Represen tives
Charlotte Catz, M.D.
Stanley Greenspan, M.D.
Don Hopkins, M.D.
Mary Grace Kovar

STEERING COMMITTEE  Vince Hutchins, M.D. Workshop Director
              Woodie Kessel, M.D. Workshop
                 Co-Director

Carol Galaty, Executive Director
Florence Foelak, Assistant to the
Executive Director

Morton Lebow, Director of Public Affairs


Contents

INTRODUCTION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  1
RECOMMENDATIONS AND FINDINGS . . . . . . . . . . . . . . . . . . . . . , . .  3
EXCERPTS FROM KEYNOTE ADDRESSES . . . . . . . . . . . . . . . . . . . . . 18
Julius B. Richmond - Opening Remarks. . . . . . . . . . . . . . . . . . . . . . . . . 18
Patricia Roberts Harris - Address . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19
George I. Lythcott - The Invisible Children . . . . . . . . . . . . . . . . . . . . . . 21
An International Perspective . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23
  Norman Kretchmer
  Robert E. Greenberg

A Domestic View: Federal Maternal and Infant Health . . . . . . . . . . . . . 24
Services Programs
Gilbert S. Ommen

PANEL PRESENTATION SUMMARIES AND EXCERPTS. . . . . . . . .27
Review and Assessment of the Current Status of
Knowledge, Services and Deficiencies . . . . . . . . . . . . . . . . . . . . . . . . . .27
Obstetrical Perspective (Ryan)
  Pediatric Perspective (Avery)
  Psychosocial Perspective (Barnard)
Dimensions of the Problem . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 1
  Who are the Underserved? (Davis)
The Multi-Risk Family: Clinical Perspectives (Greenspan)
  The Promise of Regional Perinatal Care (Johnson)
Social Strategy Influences . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35
  The Epidemiology of Adverse Outcomes (Oakley)
  Statewide Strategies for Developing Effective
    Perinatal Care Systems (Graven)
Data Systems and Information as Tools for Making the
   System Operate More Effectively (Brann)

vii


The Needed Resources. . . . . . . . , . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40
Public/Private Financing of Maternal and
  Child Health Care (Jones)

Highlights from the Report of the Select Panel
   for the Promotion of Child Health (Schorr)
  Human Resources for Delivering Needed Maternal and
   Child Health Services (Green)
Appendix A - Participants . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45
Appendix B - NeededServices . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 50
      (from Report of Select Panel for The Promotion
       of Child Health)

. . .
Vlll


Introduction

Since the turn of the century, the United States has made great advances
in improving infant health, as indicated by the infant mortality rate. From
an infant mortality rate of more than 100 deaths per 1,000 live births in the
early 19OOs, infant mortality declined steadily until the 1950s. After almost
ten years of relatively little change from the mid-1950s to the mid-1960s, the
marked decline in infant mortality resumed, to a rate of 13.0 deaths per
1,000 live births in 1979.

While recognizing this significant achievement, Surgeon General Julius
B. Richmond has said: "If we are to accelerate or even continue the prog-
ress we have made in improving maternal and infant health in this Nation,
we must have a firm knowledge base drawn from science and sound profes-
sional practice, assess our commitment of current health resources and serv-
ices directed at improving pregnancy outcome, and develop the social
strategies needed to target our efforts, especially toward those who remain
unserved and underserved."

To contribute to the achievement of these goals, as well as furthering the
over-all disease prevention and health promotion objectives set by the
Department of Health and Human Services for the 199Os, Dr. Richmond
convened the first Surgeon General's Workshop on Maternal and Infant
Health, December 14-17, 1980, in Reston, Va. The Workshop brought
together 72 health and social services professionals, economic experts, con-
sumer representatives and State, Federal and local government officials for
intensive discussions of the subject.

The principal objective of the Workshop was to survey and analyze the
state-of-the-art and to develop policy recommendations for a national
social strategy that would help assure the continuation of past progress in
reducing infant mortality and morbidity and improving pregnancy outcome
in the United States, with particular attention to populations at greatest
risk. The Workshop participants reviewed national objectives for maternal
and infant health, explored the development of alternative indices for
maternal and infant health status and addressed the unresolved problems
that raise barriers to further reduction of infant mortality and morbidity.

The Workshop was asked to build on the work of the Child Health In-
itiative of the Secretary of Health and Human Services, the Surgeon Gen-
eral's Reports on Health Promotion and Disease Prevention, Healthy Peo-
ple, and Promoting Health and Preventing Disease: Objectives for the Na-
tion, and the Report of the Select Panel for the Promotion of Child Health.

1


The Workshop focused on three basic themes: improvement of service
delivery to the underserved; expansion of health promotion and prevention
services; and knowledge development. The participants were divided into
three discussion groups to consider Urban Issues, Rural Issues and Issues of
Knowledge Development and Application. Their assignments were two-
fold:
A. To review and assess the current status of:
   . The state-of-the-art of knowledge concerning health services and
   treatment interventions that affect maternal and infant health.
   . The present systems, approaches and services available to improve
   maternal and infant health.
  . The deficiencies in current services and knowledge related to im-
  proving maternal and infant health.
   . Allocation of resources for maternal and infant health.
B. To develop social strategies to:
   . Target, improve and expand services to maintain the improvement
  of maternal and infant health, especially for populations at risk of
   adverse outcomes.
   . Expand health promotion and prevention services for maternal and
   infant health.
  . Develop and apply knowledge needed to continue to improve
   maternal and infant health.
In considering these strategies, the participants were asked to include and
identify the roles and responsibilities of government, public and private
agencies and organizations, private health care providers, and the public at
large for the development of partnerships and coalitions in meeting iden-
tified needs.
After separately discussing the issues, the three participant groups com-
bined to consider the various findings and recommendations in a total con-
text and refine them for presentation to the Surgeon General.
Presenting the findings and recommendations of the Workshop to the
Surgeon General, Workshop Chairman Ezra C. Davidson, M.D., sum-
marized the deliberations that concentrated on social strategies that will be
needed to continue to reduce infant mortality in the United States and to
assure that no groups are left out of future progress as further reductions
are achieved.
One of the main messages growing out of the Workshop was that services
and public education should insure that care to pregnant women begin in
the first three months of pregnancy and continue through the early life of
the infant.


Recommendations and Findings

INTRODUCTION

In a democratic society, public support is essential to political decisions
favorable to any policy and program initiatives. In the area of maternal and
infant health, with its complex medical, social and economic implications,
several elements are necessary to the achievement of favorable decisions and
goals.

First, there must be an effort to maintain the problems of infant and
maternal health high on the national agenda.

Second, there is a need to form strong coalitions of leaders and interest
groups in the public and private sectors who support the cause of healthy
mothers and infants and are willing to work toward advancing that objec-
tive.

Third, an informed citizenry is a source of strength in working to achieve
national objectives.

These three principles require placing relevant information before leaders
in the administrative and legislative branches of government, members of
the involved professions, public interest groups and the public at large.
Available data and other information can be mobilized to attract the atten-
tion of many sectors of society and to mold a strong constituency for mater-
nal and child health and well-being. Themes to recognize in supporting the
cause of maternal and child health include:

. Problems in maternal and infant health are social problems, in addition
to being those of individuals and families, and, therefore, are legitimate and
significant domains for public policy.

. The effect of resources allocated to these problems, and the programs
these resources helped to mount, are among the very few in health and
human services that can be measured in solid and quantitative ways. Data
demonstrate spectacular relations between national investments and results
obtained. They also indicate a strong measure of efficiency and effec-
tiveness in the use of resources.
. Controlling a problem is different from liquidating it. Health problems
related to infants and mothers are controllable and great strides have been
made. However, the levels of control already attained can be reduced if
vigilance is lowered or resources and efforts are cut back.
. There remain wide variations in rates of mortality and morbidity among
different sectors of the population, some of the rates being unacceptably
high.

3


. Support for policies and programs related to infant and maternal care is
rooted in basic human decency and certainly in prevailing American values.
It is important, however, to make the point that there are many economic
benefits that flow from the proposed policies and programs. Information
can be compiled about the reduction in rates of hospitalization and long-
term institutionalization, about reductions in the need for other costly serv-
ices, and the economic returns from adults whose health was spared from
serious problems through these programs. It would also be useful to gather
and disseminate information about the relationship between infant mor-
bidity and handicaps; subsequent abuse and neglect; and potential for
crime, delinquency and other deviance.
The goals of policies in this area, the nature and organization of proposed
programs, and information concerning infant and maternal health care
should constitute the subject of public debate in national, regional and local
forums encouraged by concerned agencies and interest groups.
The pluralism of American society is most likely to be reflected in
pluralistic solutions. And, it is through debate at the various levels that pro-
grams can be evolved to meet general standards of quality and effectiveness
while being tailored to unique local needs and environments.
It is with these concepts and principles in mind that the Workshop
presents the following recommendations and findings which are not com-
prehensive, but point out high priority areas:

Recommendation 1

There should be a national initiative to assure prenatal evaluation and
counseling in the first trimester of pregnancy for all pregnant women.
a. There should be a linkage of pregnancy diagnosis to opportunities to
receive this care.

b. There should be no fiscal, categorical or administrative barriers to
receipt of this prenatal evaluation.
c. The counseling should include information on the risks of smoking,
consumption of alcohol and other drugs, and environmental hazards.

Recommendation 2

The Surgeon General's Workshop endorses the standards of prenatal and
infant care, including psychosocial support and family planning services,
proposed by the Select Panel for the Promotion of Child Health (See Ap-
pendix B).

Recommendation 3

Maternal and Child Health (MCH) care should take place within a
regionalized system which focuses on primary providers and has service,
education and quality assurance or evaluation components. This system
should function under the direction of a regional council which works with
MCH resource centers and other providers. Each MCH area should have a
designated MCH center to serve as an educational, consultative and care
resource to the region.
4


All MCH programs should have a strong mental health component which
includes capacities for:

a. Identification and recognition of the special cultural and other in-
dividual differences in family functioning and prenatal and early child
care patterns to guarantee appropriate service availability and effec-
tiveness.
b. Provide expert consultation including where appropriate, diagnosis
and preventive intervention planning to meet the needs of families where
for a variety of reasons traditional clinical services are not available or are
ineffective.
c. To make available appropriate expertise for integrated health, mental
health, and special education services during the time of rapid central
nervous system growth in the early years of life.

Rationale

There is evidence that regional perinatal programs are able significantly
to improve pregnancy outcome with a comprehensive system functioning at
all levels of health care delivery. The regional concept can be broadened to
include all MCH activity. The focus of most MCH activity should be where
primary care is given. Programs which function to centralize care at tertiary
centers do not maximize outcome.

In addition to service, the ideal system must have sophisticated educa-
tional activities to improve and maintain professional skills and research or
outcome evaluation to provide an objective basis for improvement and
change. Systems with an objective data base are necessary for the efficient
use of human and financial resources, and they allow targeting of specific
problems.

The lack of appropriate effective MCH services are often related to an in-
ability to understand and/or meet the special needs of at risk populations,
especially the underserved.

Implementation

The lead agency for the implementation of a regionalized system should
be the State health department. This agency, because of its responsibility to
the entire State, should identify the appropriate regional structure. Regions
must be logical and follow patient service patterns and not be bound by
political jurisdictional boundaries (States, counties and health service agen-
ties) .

The State health department should create a statewide MCH council and
regional councils when more than one region is designated. The councils
should have memberships of health professionals and representation from a
broad spectrum of organizations with an established interest in MCH and
consumers.

Regional MCH resource centers should be designated by the councils for
each region. These centers, often located at universities, would contract
with the State to provide personnel, skills and leadership to meet the goals

                                            5


and objectives established by the council. These centers must work in con-
cert with the entire region. Specific activities of the resource centers should
include: speciality and subspeciality medical services, including consultation
and patient transportation, education, data collection and evaluation.

Much of the basic framework and maintenance of the regionalization ef-
fort can be accomplished through improved utilization of existing
resources, such as Social Security Act Titles V, X, XIX, XX; WIC; and
State matching funds, State education funds and private sector support.

Recommendation 4

To improve maternal and infant health, adequate financial support
should be available to provide services, especially to the underserved and
adolescents. Public programs and private insurance should provide com-
prehensive coverage for all pregnant women and infants, through such con-
siderations as:

a. Revision of Title XIX State matching formula should be considered to
address criteria such as low-income population, available State tax base
funds, number of mothers and children in need, number of mothers and
children served by public programs and hospital reimbursement policies.
b. Studying of revision of the Title V formula should be undertaken with
consideration of links to need (e.g., number and rate of live births, infant
mortality, low birthweight rate, adolescent pregnancies, adjusted income,
level of education and performance criteria) as factors in the formula.
c. Increasing State legislature funding for perinatal services.
d. Finding ways to provide for the special needs of pregnant women and
their children who do not have U.S. residential status.
e. Taking immediate remedial,action before the above long-term changes
are effected, to meet the financial crisis currently existing in urban inpa-
tient and ambulatory care institutions for underserved populations.
f. Initiating policy changes that would permit service dollars to follow
patients across political jurisdiction boundaries.

Recommendation 5

Expand mechanisms to pay for prenatal care, delivery and ongoing child
health care for the uninsured.

Expansion of public financing programs.

Over seven million children and pregnant women are poor but ineligible
for coverage under the Medicaid program. Many live in urban and rural
areas but remain uncovered because they fail to meet restrictive eligibility
criteria. For example:
. Many low-income women and children live in two-parent families, yet
only 33 States cover children in intact families.
. A high proportion of pregnant women and children are poor but do not
meet very strict State income requirements.
. Most States fail to cover women for their first pregnancy.

6


As a first step designed to address the most pressing coverage needs of the
uninsured poor, we recommend that Federal/State health financing pro-
grams be required to cover all poor children and pregnant women regardless
of family composition. This will assure that those most in need will not be
denied access to vital pregnancy-related or child health services because of
inability to pay for care.
Expansion of private insurance

Most Americans receive insurance coverage through the workplace. Yet a
high proportion of urban and rural residents are without such protection
because they tend to be employed in small firms, farming or self employed
where there are no insurance benefits. Those residents who do receive in-
surance protection through employers are far more likely to have only
minimal benefit coverage. We recommend that groups be formed to work
with State legislatures to assure that all States require all insurers to include
a minimal set of pregnancy-related and infant care benefits in all plans in-
cluding:
. prenatal care
o all labor, delivery and postpartum care
. all medical care needed by infants in the first year of life and all preven-
tive services up to age 5.
. making efforts to educate and mobilize interested parties (employers,
employees, unions, legislatures) to assure that employer health insurance
packages include comprehensive care for women and children.
These recommendations do not preclude other innovative approaches
(e.g. "completion") but the basic necessity of ensuring universal coverage
of services for mothers and infants cannot be compromised.
Recommendation 6

There must be support for extension of existing Federal, State and local
programs to provide ambulatory prenatal care to areas without adequate
resources.

Rationale

a. It is recognized that ambulatory prenatal services are woefully lacking
in rural America in general. This may be the result of the lack of
opportunity for a pregnant woman to enter the health care system
because of the absence of trained personnel to provide these services.
b. The patient may not be able to pay for the services that are needed for
optimal prenatal care. Many private providers are requiring payment in
advance of services to be rendered.

c. Without adequate quantity and quality of prenatal services, early
assessment or high risk identification may not be done in time to identify
the type of specific care that may be needed.
Implementation

a. Require the provisions of prenatal care in all NHSC programs (free-
standing and RHIs).

7


b. Require that CHCs provide ambulatory care for prenatal patients.
Both a. and b. must be a system of referral for delivery and for return
follow-up care.
c. Make it mandatory that prenatal services are a priority where local
health departments receive Title V funds and that Title V agencies pro-
vide prenatal services if no other appropriate means are available.
d. Provide support for existing nurse midwifery and/or nurse practi-
tioner programs; and accredited PA and Child Health Associate Pro-
grams.
e. Encourage the development of prepaid insurance programs, i.e.
HMOs.

f. Concentration of efforts so that third party companies will be made to
cover certain ambulatory services, i.e. outpatient sterilization, laboratory
services, genetic counseling.
g. Create a regional perinatal council that may assist in recruitment and
continuing education of the providers in rural areas.
h. Support the development of transportation systems for women to
receive prenatal care as well as well-baby care for their infants.
i. Revise the definition of manpower for underserved areas to include
areas where there may be a physician, but the physicians will not provide
prenatal care and will not deliver babies.
j. Revise the GMENAC recommendations on the future need for train-
ing obstetricians and gynecologists in the light of the newly emerging in-
formation that many family practitioners in small rural areas are refusing
to provide prenatal care and to deliver babies.

Recommendation 7

To improve nutrition the following recommendations are made in accord
with those of the Select Panel:

. The Nation must be educated by all appropriate sectors of society-the
health system, schools, the media, private industry and government-about
health promoting and risk reducing diets.
. Employers and health care providers should take steps to encourage
breast feeding and support mothers who choose to breast feed and are able
to do so.

. Policies of both the public and private health care sectors should ensure
that nutrition services become an integral part of health services for mothers
and children.

Recommendation 8

The trend towards physicians in rural areas discontinuing the provision of
maternity services should be moderated and if possible reversed.

Rationale

a. This trend is generally detrimental to the desired outcomes for
mothers and infants.

8


b. The Workgroup believes that all women should have accessibility to
maternity services appropriate to their individual risk status as near to
their homes as possible.
c. Maternity services delivered in community hospitals as appropriate
under (b) will be generally more personal, convenient and less expensive.

Implementation

The Office for Maternal and Child Health should call a joint conference
to include the American Academy of Family Physicians, American College
of Obstetricians and Gynecologists, American Academy of Pediatrics,
American Hospital Association, American Osteopathic Association,
American Medical Association and other appropriate private and public
agencies to examine this issue and make appropriate recommendations for
correcting this problem.

Recommendation 9

Federal Food Programs (WIC, Food Stamp, Food Commodity and
School Lunch) shall be introduced or extended to provide low income preg-
nant and postpartum women and infants with nutritious food and provide
cultural and ethnic food choices.

Rationale

Nutrition has not been adequately recognized as an integral part of ma-
ternal/infant health services. Good nutrition is essential to the development
and maintenance of optimum health. In addition, good nutrition reduces
the frequency of such problems as anemia, toxemia, low birth weight, and
nutritional deficiencies.

implementation

Federal: The USDA should change the regulations of the Federal food pro-
grams to allow alternative ethnic and cultural foods-especially for Indo-
chinese, Korean, Vietnamese and other minority groups whose needs have
not been previously addressed.

Slate: Each State should see to it that low income pregnant and postpartum
women and infants should receive food from one or more of the Federal
food programs.

. Pregnant women should be given priority
. Within three years low income women and infants in all geographic areas
of the State should have access to WIC services
. These services should be coordinated with maternal and child health pro-
grams.

Each State should see that the food programs offer education regarding
maternal and infant health and family food budgeting and preparation.
Local: School Lunch Programs should be introduced or expanded to pro-
vide a free lunch for students who are low income expectant mothers.

9


Recommendation 10

The following data systems should be developed to improve management
of perinatal programs:
a. Birth-death record linkages.
b. Uniform patient data base.

Recommendation 11

The Surgeon General should promote a single standard definition of
maternal mortality, perinatal mortality and other measures of mortality rel-
evant to maternal and infant health and work with State registrars and
health officers to assure that standard measures are adopted in each State.

Recommendation 12

To improve maternal and infant health, the Secretary of HHS should
convene a task force to explore approaches to developing effective quality
assurance programs in public and private ambulatory care settings encom-
passing all members of the professional care team.
Recommendation 13

The Surgeon General should bring together the relevant parties, such as,
public health, nursing, medicine, nutrition and other health professionals,
to plan for the training of maternal and child health professionals. Service
models for maternal and child health should be created as a basis for train-
ing and delivery of services. Elements of this training that the Workshop
considers important include the following:
. Use of health teams.

. Utilization of mid-level practitioners.
. Emphasis on growth and development, psychosocial factors and nutri-
tion.

. Emphasis on training in public policy and public administration.
(The above are in accord with the recommendations of the Select Panel.)

Recommendation 14

An organized program of education in systems development and com-
munity resource development pertaining to regionalized maternal and child
health care should be provided for staff at State Health Department
Perinatal Centers and university perinatal staff.
Rationale

There is enthusiasm for this concept in some rural areas which lack per-
sons with expertise in developing such services. Providing training to ap-
propriate persons would facilitate planning and implementation of region-
alized perinatal services.
Implementation

Approach the Office for Maternal and Child Health, and private founda-
tions for initial funding of such services.

10


Recommendation 15

We strongly recommend that in rural areas, maternal and infant services
be strengthened through utilization of indigenous workers (Resource
Parents).

Rationale

The traditional health care system has not been completely successful in
promoting and enrolling women into early prenatal care. In addition it has
been difficult to sustain mothers and infants in the system through the
perinatal cycle (21 months) for a variety of reasons.

Indigenous workers have been successfully used in numerous health pro-
grams to extend accessibility, acceptability and continuity of care.

Indigenous workers (Resource Parents) could:

. Identify pregnant women who are not in a system of care
. Facilitate entry into the health care system and other community agency
resources as needed

. Serve as interpreters for language and/or cultural values between patient
and care provider
. Provide support so that mothers and infants will continue in the health
care system for the prescribed course of care.

Qualifications

Resident of target area and respected member of target population, pref-
erably a parent, who has demonstrated leadership, and has interest and abil-
ity to convey concepts and skills to parents.

Functions and Training

Job description, initial training, continuing education and consultation
should be developed through the Area Resource Center jointly with the pri-
mary care and mental health providers and members of the local commu-
nity. The curriculum may be based on guidelines from already established
training programs, but should be designed to meet specific community
needs.

Identification and Recruitmeni

The primary care provider may request selected agencies to assist in the
identification and recruitment of Resource Parents, who may be volunteers
or may be funded through the following sources: CETA, Title XX,
Agricultural Extension, public agencies, project grants, local community
funding such as service clubs, voluntary health services or church groups.

Recommendation 16

The Workshop supports the continued implementation of the Public
Health Service genetic diseases program and encourages further regionaliza-
tion and extension of the program to uncovered areas. Infants with abnor-
malities identified through mandated neonatal screening programs should
be assured of follow-up and treatment.

11


Recommendation 17

Adolescents represent a special population with problems of sexuality,
pregnancy and parenting. There should be special programs to meet the
needs of this population, to include health, education, social, nutritional
and other support services.

Recommendation 18

Each State should develop a plan to make prenatal and parenting edu-
cation available to all families during pregnancy and to those families with
preschool infants.

Rationale

Many families in urban and rural areas have no, or limited, access to
prenatal and parenting information.

Implementation

The Office for Maternal and Child Health should work with State health
departments to develop plans in cooperation with State and local prenatal
and parenting education groups, and health providers to utilize present pro-
grams when available and create new programs where not available.

Recommendation 19

The Workshop supports the organizational changes recommended by the
Select Panel to reduce fragmentation and improve administration of mater-
nal and child health programs on the Federal level and the State level, in-
cluding:

. Every State should review its options for consolidation of program effort
related to maternal and child health and attempt to place authority over all
relevant funding streams in an appropriate division in the State health unit.
. Creation of a Maternal and Child Health Advisory Council in each State.
. Establishment of a Maternal and Child Health Administration as an
agency of the Public Health Service, which would include, at a minimum,
the Title V MCH program, the Adolescent Pregnancy Program and Title X
Family Planning.
. Creation in legislation of a National Commission on Maternal and Child
Health.

Recommendation 20

The Workshop recognizes that there are a large number of people who
are currently denied access to adequate maternal and infant care which in-
terferes with improving pregnancy outcome and improving infant health.
The Surgeon General and the Secretary of HHS should take strong
measures to remove these barriers where they exist within programs pro-
viding maternal and child health training or services, such as:
. Racial, age and residential status discrimination.
. Insensitivity of providers.

12


, Lack of respect for patients.

. Refusal to place services in areas where the clients are located.

. Lack of recognition of clients as equal partners in efforts to provide serv-
ices to the needy population.

Recommendation 21

Research should be continued to find more information concerning the.
initiation of labor.

Rationale

The knowledge already gained in this field holds great promise for attack-
ing the high rate of pre-term births since the large portion of neonatal
deaths comes the pre-term births.

Recommendation 22

A research program on pregnancy, birth and the infant should be sup-
ported to help increase the understanding of the problems of pregnancy,
embryonic and fetal development, the birth process, lactation, and neonatal
development.

Rationale

A research program in this area can and will contribute knowledge on
methods to assess and determine fetal distress and immaturity, as well as
knowledge concerning the transmission of genetic material and techniques
for intrauterine diagnosis.

Implementation

Additional research opportunities should be pursued to tind out:
a. What changes occur in uterine, placental, and fetal circulatory pat-
terns following maternal exercise, stress, alcohol consumption, or smok-
ing;
b. Effects on fetal development of chronic oxygen deprivation;
c. Fetal adaptation to less than optimal intrauterine environments;
d. Maternal and fetal roles in the onset of human labor;
e. Management techniques for high risk pregnancies; and
f. Neonatal disorders that compromise successful adaptation to ex-
trauterine life.

Recommendation 23

A research program to study the causes of Sudden Infant Death Syn-
drome and to identify the risk factors that predispose an infant to SIDS
should be carried forward.

Rationale

Efforts have already contributed toward understanding the relationship
between chronic hypoxia and SIDS as well as the realization that SIDS vic-
tims are not as healthy as once believed.

13


Implementation
Two major groups of studies should be undertaken which include: an epi-
demiological study of SIDS risk factors and an expansion of basic studies
on the causes of SIDS.

Recommendation 24
A research program should be carried forward on congenital defects
which would support studies on inborn structural, functional, and bio-
chemical defects found in the fetus and the newborn.

Rationale
Research in the past led to the rubella virus vaccines as well as techniques
to detect congenital defects in utero.
Implementation
Studies should be carried forward to determine what genetic and cultural
factors may regulate or interfere with normal development; how maternal,
paternal and fetal exposure to potential teratogenic drugs and agents may
be causes of newborn congenital malformations; and how genetic environ-
mental factors interact to contribute to congenital defects.

Recommendation 25
A nutrition research program should be carried forward to gain more
knowledge on infant feeding patterns, the development of dietary patterns
and tastes, and the role of social and cultural factors in human nutrition.
Rationale
We have increased our understanding of nutrient requirements during
pregnancy and infancy, the control of glucose metabolism in pregnant dia-
betic women, and the contribution of nutrients to hyaline membrane
disease.
Implementation
We should continue and expand studies to:
a. Determine the nutritional status and requirements of pregnant women
and the fetus;
b. Increase knowledge about nutritional management for premature in-
fants;
c. Find the precursors and determinants of childhood obesity; and
d. Find out more about the role of breast milk in prevention of infection
in the infant.

Recommendation 26
Develop an index of morbidity including indicies of assessing and
measuring the well-being of populations of infants and families.
Rationale
Such an index would provide us at Federal, State and local levels with a
sensitive tool to measure continued progress.

14


Recommendation 27

Facilitate the establishment of a State and/or subarea perinatal sur-
veillance system along with the training of persons (perinatal epi-
demiologists) who would collect, analyze and distribute on a timely basis,
perinatal information.

Rationale

The vital statistics system of the United States is the one certain data
resource for developing trend information on birth weight and neonatal and
postneonatal mortality for all areas. Some States have greatly enhanced the
use of the system by linking birth and death records to increase our
knowledge about risk factors which helps focus programs more closely on
high risk sectors of the population.

Implementation

As linked birth and death record data become available, increased atten-
tion should be given to the production, analysis and dissemination of the
data that are useful for policy and planning agencies. Fetal death statistics
which vary from area to area require that new attention be given to improv-
ing the data base in all parts of the country for fetal mortality, particularly
at gestation ages of 20 weeks or more. The National Center for Health
Statistics should place these recommendations high on the agenda of its
relationships with State health statistics agencies.

The Birth Defect Surveillance activities of CDC should be continued and
expanded to broaden the search for causes of birth defects and to monitor
the causes of infant pediatric morbidities.
CDC should expand the Epidemiologic Intelligence Service specifically to
increase epidemiologic capacity in State perinatal and Maternal Child
Health departments as it has done in State infection control units in State
Health Departments.

Recommendation 28

Institute and/or continue population based longitudinal surveillance of
significant childhood morbidities to help understand the magnitude and the
correlation of these morbidities as the population matures.

Rationale

These represent major methods for better understanding risk factors and
assessments of interventions for which new investments are needed. These
studies are essential to understanding morbidity in children.

Recommendation 29

Establish community oriented, university based health services research
centers responsible for collecting, analyzing, and disseminating data as well
as training investigative perinatal health professionals.


Recommendation 30

Institute studies in health services, behavioral, and social research
specifically looking at the characteristics of populations which do not re-
ceive prenatal as well as child care services. These studies should follow sub-
sequent developmental patterns including infant and family patterns from
the prenatal stage through the early years of life. They should also examine
the characteristics of the present health care system which impede the
delivery of such services as well as the patterns of care which provide effec-
tive services.

Rationale

Considerable new knowledge is needed to improve health services for
mothers and infants especially for underserved segments of society. To im-
prove health outcomes as much as possible, we need a better understanding
of the precise events that affect pregnant women and infants and the range
and variation in subsequent developmental patterns in the infants and their
families.

Also, there is the need for more information about the nature and utiliza-
tion of the interventions health professionals use to meet such risks and how
to improve clinical service approaches and outcomes. The problem is com-
plex considering the extended period from anticipation of pregnancy to the
development of the fetus and the newborn through infancy.

Implementation

Significant investigations are needed to:
a. Determine the characteristics of populations not receiving prenatal
and well-child care services and their subsequent developmental patterns
and the characteristics of the supposed health care delivery system serving
those populations and the ingredients of a more effective health care
system.
b. Determine the differences in pregnancy outcomes between well served
and unserved or underserved groups.
c. Study the organizational aspects for health services for mothers and
infants including: the layout of services, the relationship of infant and
maternal health care to other services, interprofessional relationships be-
tween professionals and other members of the staffs and develop the
clinical science of intervention for the population at risk for poor out-
comes.

Recommendation 31

Evaluate the effects of pluralistic service delivery approaches on maternal
and infant health problems which have a multitude of causes.

Recommendation 32

Evaluate and monitor the consequences of diminishing and/or realloca-
tion of resources currently supporting maternal and infant health services.

16


Recommendation 33

The Workshop urges the Surgeon General to use the influence of his of-
fice to develop a strategy of public information and education to promote
the recognition of the great value to the nation of healthy pregnant women
and infants.

17


Excerpts From Keynote Addresses

OPENING REMARKS, DECEMBER 14-
JULIUS B. RICHMOND, M.D.
Surgeon General and Assistant Secretary for Health, U.S. Department of
Health and Human Services

In recent years, we have made considerable progress in the reduction of
infant mortality. Chances that a child will be born alive and will live to his
or her first birthday are better now than at any time in our history. Between
1965 and the present, infant mortality rates dropped almost 50 percent to
the present rate of fewer than 13 deaths for each 1,000 live births.

Although this progress is dramatic and encouraging, the mortality rates
for black infants-twice the rate for whites-is unacceptable in our society.
And it is disturbing that the gap in the rates between white and black is not
narrowing.

In the light of progress we have made, and in view of the glaring gaps, it
was felt there should be a review of where we have been and where we are
going in order to make improvements and to sustain and, even, accelerate
progress. It is time to take an inventory and for that reason this Workshop
was organized to bring to bear expertise and competence on the subject of
parental and infant health, which underscores the role of both mother and
father in the assurance of good infant health.

There are inequities within the general progress we have made in pro-
moting infant and child health. For example, low income populations today
are seeing providers of care as frequently as the more affluent. The problem
is they are not necessarily getting the right kind of services, not receiving
preventive services and, usually, services characterized by lack of continu-
ity.

We need now to develop strategies that will enable us to cope with these
and other problems in effective ways.

I think that we are very fortunate in this country that these efforts to im-
prove maternal and infant health do not come from one source exclusively;
not exclusively or even predominantly a Federal effort. Much health care is
provided in this nation through the private sector and bringing together pri-
vate and public actions becomes important as we pursue this effort.

Last year, the Surgeon General's Report on Prevention set as a national
goal the reduction of infant mortality to a rate of nine per 1,000 live births
by 1990. But we must recognize that the present rate of 13 per 1,000 is low
enough to plateau once again. Then, the issues become much more complex

18


and difficult to assess and resolve. I am sure this group recognizes the seri-
ousness of that problem and will provide valuable guidance as to how to
proceed to continue to improve maternal and infant health for all parts of
our society.

The shaping of public policy in a pluralistic society is a complex process.
Three major factors interact in the development of improved programs.

The first is clearly a sound knowledge base from which we can generate
improved programs. Certainly, through research and professional experi-
ence, we have a much richer knowledge base than we had several decades
ago. It must continue to grow, but the knowledge base isn't always applied
fully or evenly.

Therefore, we must turn our attention to the need for two additional
dimensions: political will-or commitment of appropriate and adequate re-
sources, and a social strategy to harness the knowledge base and the polit-
ical will. Clearly, the commitment of resources is not enough unless we have
the overall social strategy through which we will be able to exercise that will.

As to the timing of this Workshop, I suggest the agenda we are consider-
ing is an important one for our nation and I do not believe any administra-
tion will be refractory to considering the issues that will come out of this
Workshop and the recommendations you will be generating. Those recom-
mendations will need to go into the public domain and I believe they will be
considered seriously by all decision makers in the public and private sectors.
Recommendations from this Workshop will be important for all of those
with responsibilities for the health and welfare of our population.

The health and welfare of our children is of particular importance. There
is a special urgency because children have only one childhood that they pass
through and, if they don't get the benefits of all that our society has for
them, it becomes very difficult to go back and make restitution.
The Chilean poet Gabriela Mistral summed it up in these words: "The
child cannot wait. Many things we need can wait, but he cannot. . .To him
we cannot say `tomorrow,' his name is `today.' "
It is in that spirit that we meet. Your work will be important over time.
I am calling upon you to assist in developing the social strategy devoted to
improving maternal and infant health in this nation. The strategy involves
not only the Federal government, but also State and local governments,
private voluntary and for-profit organizations, and academic institutions
and foundations, all working together toward the common good.

ADDRESS, DECEMBER 15-
PATRICIA ROBERTS HARRIS
Secretary of Health and Human Services
The fundamental issues which face this country will remain the same no
matter who holds the reins of power and, traditionally, we have functioned
within a broadly defined consensus about what we seek to accomplish in
order to make this a "more perfect union."

                                             19


In the area of health and human services, our shared concern about the
well-being of our fellow citizens insures that we will face a number of issues,
but today I want to focus on one issue about which all of us share con-
cern-the health and well-being of mothers and children.
Every one of us-from President to private citizen-bears a special
responsibility for the fate of the Nation's children. Children are at one and
the same time our most valuable and our most vulnerable human resource.
Their future is, in a very real sense, our future; and each generation owes to
the next an investment in the health and well-being of children.
We need not approach the issue of child health today as a crisis. On
balance, the statistical information indicates quite the contrary-that the
health of our children has never been better. The infant mortality rate is at
its lowest point in the nation's history; infectious diseases have been re-
duced dramatically; parents today have a better chance of raising healthy
children into adulthood than at any point in world history.
We can be proud of those accomplishments. At the same time, a closer
look indicates that not all the vital signs are good.
The most disturbing sign of trouble is that Americans do not share
equally in this improved health status. Black infants, for instance, have a
mortality rate which is nearly double that of whites. Furthermore, among
children aged one to four, minority children die at a rate 70 percent greater
than white children; and non-white children die from disease and birth
defects at rates 25 percent higher than whites.
Poor children-a disproportionate number of whom are minorities-
inherit ill health along with their poverty; and ill health at such an early age
can become a lifetime affliction.
The health of American children might be better than ever before, but the
health of some American children and the health of countless other children
beyond our borders is far worse than any of us can, or should, accept. I did
not come here today, however, to wring my hands about such conditions.
Those of you in this audience appreciate both our successes and the enor-
mous challenge which lies ahead. And so, for us, the question is: "Where
do we go from here?"
In my judgment two obstacles lie before us-one, a largely technological
and managerial challenge and the other a test of our moral commitment. On
the one hand we must have the tools to do the job and, on the other, the will
to get it done.
In our evolving understanding of the full meaning of the words "equal
opportunity," we must now recognize that adequate health care is a prereq-
uisite to equal opportunity in this society. Health care must be a right for all
our people and adequate health care for infants and children, those who are
just beginning life, is clearly essential.
This, then, is my message to you today. As involved as you are every day,
in the delivery of services, in research, and in the better management of pro-
grams, you and this country cannot afford to lose sight of the other obstacle

20


which stands between us and better health for our children. In addition to
those specific roles which must be played in securing maternal and child
health, you must become advocates of a cause; this country needs your help
in making certain that all your fellow citizens understand as you do how
much remains to be done if all children of this planet are to have a chance
for decent health.

We can bring about change. We may complain about shrinking
resources, but the task can be accomplished if we manage those resources
well and if we remain committed to the cause.
With help from millions of caring people in every walk of life, we can
save children from the ravages of disease and poverty, and we must. For if
we do not save the children, we shall have lost everything.

DECEMBER 16: THE INVISIBLE CHILDREN-
GEORGE I. LYTHCOTT, M.D.

Administrator, Health Services Administration, Department of Health and
Human Services

When we compare our progress in recent years with that of many other
industrialized Nations, we find that we are not performing as well as we
might in maternal and infant care. We rank 14th among the Nations in in-
fant mortality. Our percentage of infants born with a low birthweight-
percent -is not as good as Nations like Sweden, with 4 percent, or urban
China, which was said to have had a prematurity rate of 2.5 percent during
the 1970s.

At least in this context, then, the issue before us here is why have be done
so poorly in comparative terms? And how can we improve our record?

My answer to the first question is: We have neglected the fundamentals of
maternal and child health. That neglect is manifestly evident among the
poor and most minorities. I call the young of these Americans our "invisi-
ble children." Tucked away in urban slums, rural backwaters and Indian
reservations, they are all but invisible to most of America. They are hungry,
ill-clothed and living in hostile environments. These children need a full
measure of primary health care if they are to make it safely to adulthood.

The terrible irony of it all is that we have all but mastered the difficult,
the complex and the heretofore considered impossible, but have overlooked
the fundamental and the basic. Our health care system is a bit like a ballet
virtuoso who can perform feats requiring the utmost agility, onstage, only
to stumble headlong over a curtain rope, offstage.

Consider these facts: some 3.3 million rural poor families in America
have no running water in their homes; another 7.2 million have to use "well
water" which fails to meet drinking standards; and 6.5 million more use
community water systems which also fail to meet standards. The answer lies
less in advancing our already sophisticated medical science and technology
and more in paying closer attention to the needs of those invisible mothers
and children living in forgotten squalor.

21


It is the nature of these problems which lie at the very heart of this work-
shop's agenda. And it is the solution to these problems that will do the most
to help us achieve those three goals for 1990 that Dr. Richmond spelled out
in Healthy People last year: reduce infant mortality by 35 percent; reduce
deaths among children one to 14 by 20 percent; and reduce deaths among
adolescents and young adults by 20 percent.

Ambitious as these goals sound, they are achievable. Given the resources,
the imagination and the commitment, we can reach those targets. Commit-
ting the resources is a decision that the Nation as a whole must make and the
mood of Congress will be critical here. But imagination and commitment
are ingredients well within the grasp of the health care community itself.

We must continue developing ideas that bring the programs of maternal
and child health into a cohesive, productive relationship with one another.
To achieve this does not necessarily require acts of law, but it does, indeed,
require acts of imagination. The 34 improved pregnancy outcome projects
scattered around the Nation are an example of this. These projects seek to
make pregnancy and childbirth safer events for high-risk mothers living in
poverty. They take dead aim at those invisible children and mothers. When
federal support funds for these projects come to an end, the structures of
collaboration they have brought into being will stay in place-bringing
together the people and the resources of the State, the community, the
hospital and the university medical center.

Ideas like this are helping to erode the petty rivalries and turf problems
that I believe he at the root of our so-called categorical health dilemma. Ex-
citing experiments in integrated service are afoot now which shatter the
myth that unbreathable walls exist between us. The laws which govern our
categorical health programs were never meant to divide our enterprise, but
were intended to fix responsibility and accountability. I submit that we can
have the latter without sacrificing the former, if we keep our eye on what
matters.

A critical reassessment of the economic and programmatic direction of.
our financing system is central and essential for all of us concerned about
the health of mothers and children. We must redirect the billions of dollars
of public and private reimbursements to provide incentives for keeping
mothers and children well, and not merely paying for their care after they
are sick.

We must plan for the future-select strategies that hold the promise of
returning more to the Nation than their cost. Few areas of health offer more
potential for realizing that aim than the health of children. We must begin
making the case that our children are not only valuable in their own right,
but respresent the Nation's primary investment in its future.
We have it within our technical grasp to complete the agenda in maternal
and child health in the next ten years. Whether we shall do so depends in
great part on the will, the vision and the imagination of experts like you.

22


An International Perspective
Norman Kretchmer, M.D., Director, National Institute of Child Health
and Human Development
Robert E. Greenberg, M.D., Chairman, Department of Pediatrics,
University of New Mexico School of Medicine
(These two scientists presented impressions of their recent 18-day visit to
the Republic of China under a scientific study agreement between that Na-
tion and the United States. The ten areas of study include child health and
nutrition and human genetics. During the visit, urban and rural areas were
observed.)

Kretchmer
One overriding impression of the Chinese situation regarding child
health, nutrition and human genetics was the policy set by the government:
"One child is the best, and two the most." Our hosts sought information
from us from a technological viewpoint regarding human genetics and
antenatal and postnatal diagnosis and postnatal care and nutrition in an ef-
fort to produce a perfect child.
One professor of obstetrics said the idea was: "`Since we are dealing with
one child, that child is a treasure and, consequently, that child must be
perfect ,"  The Chinese are looking to the Americans to provide
technological know-how to help them achieve that level throughout the Na-
tion.
Prematurity rates were surprising: 6-10 percent in urban areas and 2-3
percent in rural areas, compared to the United States rate of 4-5 percent at
the very best and 12-14 percent at worst.
The Nation is seriously deficient in research and medical education; the
cultural revolution which took place some years ago put China back two
generations in research.

Greenberg
We noted a sharp contrast in the implementation of a system of
care-rural and urban-and a coalescence of therapeutic and preventive ef-
forts, opposed to frequent separation that characterizes the American situa-
tion.
There are some 50 minority groups in China, but they represent only a
small portion of the population so the people are generally of a quite com-
mon genetic stock. One is offered the research opportunity of investigating
general genetic uniformity, compared to the disparity in the United States.
From our viewpoint, the reduced incidence of low birthweight infants
that seems to characterize many areas of China is absolutely incredible. This
represents an important area for investigation. If true, a marked reduction
of low birthweight infants can be effected in the absence of technology and
even secondary resources. 1 hope one of the outcomes of this Workshop will
be the recognition of the importance of cross-cultural research efforts to
determine low birthweight infant statistics.

                                            23


A DOMESTIC VIEW: FEDERAL MATERNAL AND
INFANT HEALTH SERVICES PROGRAMS

Gilbert S. Omenn, M.D.
Program Associate Director, Human Resources, Office of Management
and Budget
Much progress can be documented by using the infant mortality rate as
an indicator and a proxy for other health objectives. The infant mortality
rate fell 44 percent in the United States between 1965 and 1978, dropping
from 24.7 to 13.8 infant deaths per 1,000 live births. Masked in this signifi-
cant overall decline, however, are substantial racial and geographic varia-
tions:
. In 1978, the nation's infant mortality rate for blacks was 23.1. In con-
trast, for Indians it was 13.7 and for whites 12.0. (No separate rate for His-
panics is currently available.) The rate for black thus was roughly twice the
rate for white.
. In 1978, Statewide infant mortality rates ranged from 10.4 to 27.3. State
rates for blacks ranged from 11 .O to 35.2, while the rates for whites ranged
from 9.9 to 14.9.
For the five-year period 1971-75, county infant mortality rates ranged
from 1.9 to 63.1. Nearly one-third of our 3,100 counties had rates in excess
of 20.0.
My staff and I recently began an in-depth review of major programs
which have as an explicit major goal the improvement of the health of
mothers and children. It includes the Supplemental Feeding Program for
Women, Infants and Children (WIC) in the Department of Agriculture and
the Maternal and Child Health, Family Planning, Community Health Cen-
ter and Head Start programs in HHS. It has been fascinating and gratifying
to hear the budgets for these important, large federal programs justified by
good results in terms of health status measures. In FY 1980, these five pro-
grams spent more than $1 billion on health and related services for more
than 10 million American mothers and children. Many of the services pro-
vided through these programs are also funded by Medicaid. Thus, the total
Federal funding channeled through these programs is substantially in excess
of $1 billion.
Several recent efforts can be cited as examples of effective maternal and
infant health program coordination.
In predominantly rural areas of Alabama, an Improved Pregnancy Out-
come project was organized to combine funds from maternal and child
health, family planning, National Health Service Corps, Appalachian Re-
gional Commission and State programs. Regional health consulting and ad-
vocacy teams were established, county-based plans were developed for local
maternal and child health services, and commitments are being negotiated
between state and county health officials regarding the quantity and quality
of services. Major improvements have been made in the analysis of vital sta-

24


tistics and in improving the data available on individual use of health serv-
ices. The initiative has been most effective in reducing the State infant mor-
tality rate-down from 20 in 1976 to below 14 in 1979. Maternal and fetal
mortality rates have also decreased. Not all indices have improved, how-
ever, the incidences of teenage pregnancies and illegimate births have in-
creased.
Again, in a rural area, north-central Florida, MHC, WIC and Title X
Family Planning, Title XIX Medicaid and Title XX social services resources
have been combined under the cooperative direction of the State and county
health departments and the University of Florida Medical School. Teams
dispatched from central project offices in Gainesville to different rural loca-
tions each day have helped reduce operating costs by centralized account-
ing, recordkeeping, external reporting and other administrative activities.
They have been most effective in reducing repeat teenage pregnancies from
40 percent in 1977 to 5 percent in 1979. Other positive health achievements
between 1977 and 1979 include a decrease in cesarean sections to 3 percent
and decreases in the rates of fetal mortality and Tow weight births.
Other examples of effective State and local program coordination are
found in South Carolina, Cincinnati, Denver and Portland. I trust that
many of you in this Workshop will provide detailed information on these
and other successful coordinating efforts. We need to encourage and
strengthen these initiatives and develop effective methods of replicating
them.
Resources from Federal health programs should go disproportionately, I
believe, to those areas of greatest need with the best plans for addressing
those needs successfully and efficiently with both public and private re-
sources. Targeting can be based upon clear, quantified objectives for im-
provements in health status and health outcomes for defined population
groups in specific geographic and political units. Local and State officials
should be encouraged to tie together the resources available from the related
Federal programs in a plan that offers the best chances in particular settings
to achieve these objectives.
Despite the focus of Federal programs on improving maternal and child
health, none allocates funds to States primarily on the basis of measures
which directly reflect poor health status. WIC allocations are based primar-
ily on each State's proportion of poor children under age five. The State's
relative infant mortality rate is used in the formula, but it receives much less
than equal weight. In addition, adjustments are made in the allocations so
that States are able to maintain program levels from year to year. The WIC
formula is not established by law, but at the discretion of the Secretary of
Agriculture. Given the 1990 goals and WIG's health objectives, I recom-
mend that we examine the desirability and feasibility of making formula
changes which would more closely target WIC funds to States with the
greatest health needs.
In the MCH program, almost half of the total program funds, by law, are
allocated on the basis of the State's proportion of live births. Additional

                                             2:


funds are allocated to States using a formula determined by the Secretary of
HHS. This administrative formula currently uses the State's proportion of
live births, but factors-in the proportion of rural births and relative per cap-
ita income. Again, given the 1990 goals and MCH's objectives, we might
consider changes in the MCH formulae, particularly administratively deter-
mined formulae.

I can recommend three immediate actions that might be considered by the
working groups at this conference:

. Despite the availability of population, income and vital statistics for
States, counties and some subcounty areas, there apparently has been no
systematic effort to identify the "pockets" of poor health which represent
our highest national priorities. Measured changes in health status should
supplant simple input measures of "underservice" in allocating human and
fiscal resources. Where improvements in quantifiable health status indica-
tors are warranted, these should be developed.

. Current Federal programs, taken together, contain considerable flexibil-
ity to target funds by the methods and to the places where they can have the
greatest impact. There should be support for cross-program strategies to
guide operating decisions.
. Each of the five programs reviewed requires area need assessments in con-
nection with project applications for funds approval. Specifications for
these assessments are similar but their quality and usefulness vary widely
across programs. Arrangements for cross-program sharing of need assess-
ment data could improve current project grant awards and enhance admin-
istrative efficiency.

26


Panel Presentation Summaries
and Excerpts

REVIEW AND ASSESSMENT OF THE CURRENT
STATUS OF KNOWLEDGE, SERVICES AND
DEFICIENCIES

Obstetrical Perspective
George Ryan, M.D.

Prenatal care for most patients begins in the first trimester of pregnancy,
but approximately one-fourth of all pregnant women in the United States
today receive less than adequate prenatal care.

The first physician visit is an opportunity, a time for identification of risk
factors for a poor obstetrical outcome- for classification of patients as low
risk, at risk or high risk and for planning the care of patients in a facility
capable of handling expected and unexpected problems. Screening for pre-
ventable risks is also possible. For example, patients may be found to have
bacteria in their urine. If undetected, serious kidney infections will be seen
in about 50 percent of these cases, whereas prompt antibiotic therapy can
virtually eliminate this risk.

Though not as yet possible, the prospect is that through screening a low
risk group may be identified which could be cared for in a less expensive
manner than the present classical care by obstetrical and gynecologic spe-
cialists and hospitalization in an expensive acute care facility.

Amniocentesis may be offered to patients at risk for genetic abnormali-
ties and to women 35 years of age and older, due to the increased incidence
of Down's syndrome (amniocentesis is highly recommended for those over
40). The risk of amniocentesis in prenatal diagnosis of genetic diseases is
low, with less than one percent complications.

Most obstetricians and gynecologists today offer patients an opportunity
to enroll in some sort of childbirth education program and to participate in
some non-critical decisions related to the way they wish to have their ba-
bies-natural childbirth, anesthesia choices, analgesia during labor, breast
feeding or bottle feeding, for example.

As the prenatal period enters its later phases, the physician is now able to
assess growth and development of the intra-uterine fetus to a degree that
was impossible even a decade ago. And, if there is some question of the rate
of fetal growth, intra-uterine growth retardation may be assessed by serial
ultrasound measurements of the biparietal and thoracic diameters of the
fetus. Whether the fetus is thriving or in danger may be assessed by a non-

                                           27


stress test which, when abnormal, can be followed by a stress test which has
greater specificity.
If premature labor occurs, newer additions to the armamentarium in-
clude beta sympathomimetics, such as ritodrine, which have the effect of
slowing or even stopping labor. Widespread use of these types of drugs will
mean that more infants will reach the 2,500 gram dividing line between pre-
maturity and maturity.
At the time of labor and delivery, family-centered maternity care has be-
come a reality in all parts of the country and today not to have the husband
or "significant other" present in labor and delivery is probably more the ex-
ception than the rule. Medication in labor has significantly decreased na-
tionally and anesthesia tends to be local or regional with both saddle blocks
and epideural anesthesia being very popular.
Delivery is still predominantly in hospitals-at 99 percent-but a growing
realization that the hospital setting frequently does not supply a satisfying
emotional experience for the mother and family has prompted the develop-
ment of "birthing rooms" within hospitals. This, combined with an aggres-
sive approach to family-centered maternity care, means the safety of the
hospital can be combined with the home-like atmosphere and satisfying
emotional experience promoted by advocates of alternative birth systems.
Although a few alternative birth centers have grown up as freestanding and
separate from hospitals, experience has not yet been broad enough with
these entities to assess their safety or their future role. A small group of pro-
ponents of home birth exists, but conventional wisdom supports the view
that the inevitable unexpected complications that occur at the time of labor
and delivery place patients choosing this option in a less safe status than
those delivered in the hospital. Nevertheless, no large scale study in this
country has been performed to answer the question of whether there is some
low risk group that can be delivered at home with reasonable assurance of
safety.
Electronic fetal monitoring has become available widely, a modality that
can be helpful in identifying fetal distress prior to serious damage to the
baby. The role of this technology in the low risk patient, however, has been
questioned and, at the present time, is not recommended for all patients,
only for those at risk.
The increasing rate of cesarean sections has been a cause of concern for
both the profession and the public. Analysis of indications for cesarean sec-
tions indicates that failure to progress in labor has increased rapidly and ac-
counts for approximately one-third of all cesarean sections, and repeat ce-
sarean sections account for another 20 percent. Avoidance of traumatic
delivery with difficult mid-forceps, and avoidance of breech deliveries, are
other evidences of changing practices which increases the cesarean section
rate. But, at the same time, they have contributed to the fact that newborn
and maternal mortality have fallen to all-time lows in the United States.
The current explosion in technology related to communications and data
processing offers an opportunity to improve regional systems of perinatal

28


care far beyond what we might have imagined a decade ago. The dream of a
widespread common data base (a sophisticated system to allow for multi-
variant correlational analysis) and the ability to more readily identify prob-
lems, are successful modes of therapy today.

Maternity care, which for years had almost a "tradeschool" aspect, has
become a much more scientifically based discipline. In recent years, it has
tempered the scientific trend with a move toward the humanism demanded
by the women of this nation.

Pediatric Perspective
Mary Elien Avery, h4. D.

Of the more than three million infants to be born next year in the United
States, some 2 to 3 percent will be born before 32 weeks of gestation and
weigh less than 1,500 grams. About 30,000 infants will be born before 28
weeks and weigh between 500 and 1,000 grams-and about half of them
ought to live.

Our society has charged pediatricians to provide optimal care for these
very low birthweight infants, but what is optimal care? It must be based on
understanding of the needs of the infants and, since experience with very
small infants is relatively recent, continuated observation and study of post-
natal adaptations and careful evaluation of all interventions is a major re-
sponsibility. The challenge is to reduce morbidity as well as mortality. A
continuing problem is hyaline membrane disease and its complications. It
can sometimes be prevented, but it requires more attention to improved
ventilatory assistance and other kinds of supportive care.

The nutrition of small infants also deserves continued study. Our knowl-
edge of precise protein, fatty acid, vitamin and mineral requirements is min-
imal.

Behaviorists remind us that infants should not be overloaded by stimuli
which can be a problem in our well-lighted, noisy nurseries where physicians
and nurses feel the need to perform many tests and where parents are intent
on touching to establish a relationship with the infant.
Although I have focused on low birthweight infants, which comprise
most neonatal deaths and account for a major share of the costs of intensive
care, we should carefully note the occasional tragic loss of term or near-
term infants.

Although neonatal mortality nationwide was down to 8.7 per 1,000 live
births in 1979, in the best of circumstances, it would have been under 5.
Thus, increasing availability of present knowledge must be a major priority.
The long-term goal of prevention of premature onset of labor and under-
standing of the special needs of the newborn depend on continued major
support of basic research in perinatal medicine and prenatal diagnosis.
I think the scientific community is poised to make major advances in un-
derstanding the biology of human reproduction, perhaps greater than at
any time in history.

29


Psychosocial Perspective
Kathryn Barnard, R.N., Ph.D
In spite of attempts to collect scientific evidence identifying factors asso-
ciated with a poor or good outcome of pregnancy, the resulting body of
knowledge does not allow one to outline assured sets of variables that will
enable us to identify which factors to attend to or change. It is important to
identify which aspects of the individual and the individual-environment in-
teraction are significant if we are to continue to reduce the rate of infant
mortality and thereby improve the outcome of pregnancies and later health
of children.
The interrelatedness of living systems must be recognized and it should be
remembered that in providing health care we are dealing primarily with or-
ganization-family/group-person/organs-cell interplay which represents a
complexity that has not been part of our scientific models of causation.
Since 1954, there has been a growing body of evidence that relates mater-
nal anxiety and psychological conflict with complications of pregnancy and
dysfunctional and prolonged labor. In spite of a 25-year span of recorded
awareness of psychological states influencing the course of labor, it is only
recently that our understanding has gone beyond the known association of
anxiety and poor labor outcomes. One study has found that a woman's de-
gree of conflict regarding her acceptance of pregnancy was positively corre-
lated with her measured state of anxiety and serum level of epinephrine dur-
ing phase 2 of labor, for example.
Several studies have related a general trait anxiety with complications of
pregnancy, but few health care providers have reported specific means of
assessing anxiety in relation to pregnancy or studies seeking to deal with
anxiety reduction.
The emotional state of mothers has been associated with children's
heaith. One study of children under 3 years of age with weights below the
third percentile (in 23140 cases where there was no organic cause for the
growth retardation) found that the mother perceived herself as being de-
pressed.
Another study concerned the effects of seven behavioral variables on fe-
tal growth which seem to coincide with motivation for health. The behav-
ioral variables included cigarette smoking, indulging in certain drugs, low
weight gain during pregnancy, failure to obtain sufficient prenatal care, un-
dertaking pregnancy when too young or too old, and being underweight for
height at conception. There was an interelationship among variables-
mothers who had one tended to have another; some had as many as 417. In
mothers with multiple behavioral variables, there was an associated high in-
cidence of premature birth and low birthweight, irrespective of socio-eco-
nomic status.
Emotional state, whether it be anxiety, depression, conflict or motiva-
tion, cannot be considered apart from the environment. It is probable that
emotional status of the mother both interacts with broader social and eco-

30


nomic factors and is greatly influenced by these variables. In turn, these so-
cial forces, given a particular emotional state, can either increase or de-
crease her susceptibility to pregnancy complications. However, few studies
of emotional status have been done, other than on Anglo, middle-class
samples.

There are several variables that most recent research into psychosocial as-
pects of pregnancy suggests as profitable when attempting to develop strate-
gies for reducing infant mortality and in general improving pregnancy out-
comes and infant health. Many authors point out that the outcomes of fetal
death, immediate neonatal and death before the first year, may be related to
different factors. In general, the longe!. the child lives, the more the general
environment influences outcome, whereas during fetal and early neonatal
periods, the greatest share of the influence comes from the status of the
mother.

Evidence suggests that emotional state is associated with biological func-
tion and, furthermore, there is evidence that links the general and more spe-
cific qualities of the environment to the emotional status of the mother.
None of these factors is considered adequately in prenatal or postnatal care.
Additional research is needed to replicate the findings regarding conflict
about acceptance of pregnancy, anxiety, life change, father involvement,
motivation for self-care and prenatal care with pre-pregnant health state
controlled.

Even with the need for more research, it seems justified to redesign pre-
natal care to meet the varied needs of different cultural groups; that the
teaching and counseling role of the nurse be strengthened; and that these
services be considered a routine of pregnancy care, rather than nice if avail-
able. In spite of frequent reference in the literature to the positive benefit of
nursing services, the economic support of nurses to provide maternal-child
care in communities has declined. Likewise, the increasing gap between in-
fant mortality rates in black and poor populations demand that we reassess
the services provided and, either through additional research or a reassess-
ment of what we have done, change ineffective strategies. There is no escap-
ing the fact that social equality must be considered. The opportunity for
employment, food housing, day care and health services must be improved
if we are to improve pregnancy and infant health outcomes.

DIMENSIONS OF THE PROBLEM

Who Are The Underserved?
Karen Davis, Ph.D.

The poor today are most often likely to be children, female or minorities.
Slightly more than one-fifth of all children living in families are in low-in-
come households. Women represent a disproportionate 60 percent Of all
persons at or below the poverty level and about one-third of them are be-
tween the ages of 16 and 44.

31


Mortality rates provide a basic means by which to assess health care serv-
ices for poor children and pregnant women and the fact that infant mortal-
ity rates for blacks and other minorities are 80 percent higher than for
whites speaks for itself. Further, in 1977, 12.3 of every 1,000 white infants
born alive died before reaching the age of one, while the rate for non-whites
was 21.7 per 1,000. Minority preschool children have a 50 percent higher
death rate than their white counterparts.

Among indicators of healthful and preventive prenatal maternal and
child health behaviors are disparities in utilization of health services. In this
connection: children in fair or poor health in the the highest income groups
made nearly 2.5 times more physician visits than children in the lowest in-
come groups who reported similar health conditions. Data from 1976 show
that: low income women were half as likely to receive early prenatal care as
high income women and women from high income families were 40 percent
more likely to receive a breast examination or Pap test than women from
low income families.

The Multi-Risk Family: Clinical Perspectives
Stanley I. Greenspan, M.D.

Infant morbidity, including social, psychological and cognitive function-
ing, is now a major national concern. This concern has perhaps necessarily
been of secondary importance to those related to reducing risk factors asso-
ciated with infant mortality.

But, as we become increasingly successful in reducing mortality rates
through improved technology and delivery of services, we shall find that
more babies are potentially capable of optimal development in social, psy-
chological and cognitive dimensions. However, as the families we have
studied taught us, the risks for morbidity are grave.

These risks encompass a broad range of human needs: the fundamental
need to survive, associated with physical protection and care: the need to
form a human attachment; the need to read and respond to the signals of
the baby correctly; and the need to foster the youngster's own capacity for
basic skills, such as reality testing, impulse modulation, mood organization,
initiative and mastery. The risks of morbidity will remain great until pro-
grams are organized which integrate a prenatal and postnatal focus for at
least three to five years.

These programs should take into account the needs of the infant and the
family and plan their approaches by building on the potentially solid consti-
tutional status of the infant as well as the specific vulnerabilities in the in-
fants and their families. These approaches will offer promise to reverse the
trends we see in multi-risk factor families, where one generation of a multi-
problem family leads to another. Many of the families already represent the
third or fourth generation and, on a case by case basis, have shown a capac-
ity to reverse the trend of deteriorating cognitive, social and emotional
functioning with appropriate preventively orietned services. Such services

32


must, in addition to the integrated prenatal and postnatal developmental
focus, offer: (a) help with concrete supports, including food, housing and
medical care; (b) an ongoing, consistent human relationship characterized
by trust and positive expectations; and (c) specific expertise and services
geared to help the infants and their families with their individual different
needs at each phase of development.

While the costs of offering such programs are great, the costs of not of-
fering them are even greater. The six percent who it has been estimated use
the SO-70 percent of all services present an economic and social cost com-
pound by the additional loss to society in potential contributors to the labor
force and to creative endeavors.

Preventive programs are not as costly as may be imagined. When services
are offered to an entire high-risk community, only a small percentage of
families actually need the most intensive help. For example, a Michigan
program found that the average cost per family was $850. In terms of
screening and backup for an entire community, the cost per family for such
services would average out into a significantly lesser amount.
Such approaches are necessary lest more children enter the ranks of those
who are too late for prevention and too many for treatment.

The Promise of Regional Perinatal Care
Kenneth G. Johnson, M.D.

Within the past six years, much attention has been given to the strategy of
regional planning for perinatal care. In the history of the delivery system for
perinatal care, the attempt to broadcast the benefits of modern perinatal
medicine to entire regions is a startling development. The concept of a re-
gionalized system of perinatal care took off in the early 1970s. At that time,
a great deal of optimism was generated among leaders in perinatal medicine
about th.e potential benefits of regional planning for perinatal care. It was
postulated that a regional plan would ensure access to the appropriate level
of care for all women and their newborn within an entire region. In the past
20 years, we have moved along a continuum of increasing expectations,
from life-or-death to the quality of the survivor-and to the social environ-
ment that will provide every child with a fair chance for optimal growth and
development.

There is a danger in citing regional perinatal care as the modal strategy of
the delivery system for such care. How well the system functions is deter-
mined by a complex interaction of natural and social supports, the physical
environment and the medical support system. Within the highly complex
delivery system for perinatal care, it is difficult and unwise to choose one
determinant as the most important. The effects of poverty, unplanned preg-
nancies, poor nutrition and other social factors contribute enormously to
the poor outcome of pregnancy.

Even with the virtual elimination of social and economic gaps in our soci-
ety, there would still remain high-risk mothers and infants in need of effec-

                                           33


tive medical intervention. To develop an effective delivery system, we
cannot afford significant omissions. Uneven access to effective perinatal
medical care has been and remains a problem and I believe all segments of
providers of maternal and infant care should welcome the new strategy of
regional perinatal care.
A regional plan is a network, within a defined region, of all providers of
care at all levels of care and the target population includes all pregnant
women. The functional elements include risk assessment, the use of a uni-
form information system and services provided by the regional perinatal
center-consultative services, laboratory services, continuing education and
training and transport services. The only reliable identifier of a participat-
ing hospital in this model is its inclusion in the regional information system.
Within the past five years, regional perinatal plans have become ubiqui-
tous, one cannot cite a single State without some regional plan within its
borders. Despite many variations, the concept of regional planning has been
widely implemented.
As to benefits, in a 1979 survey by the American College of Obstetricians
and Gynecologogists of obstetricians practicing in five regions where peri-
natal care had been regionalized, physicians reported improved access to
consultation and care for their high-risk patients; and for themselves, im-
proved educational programs. The physicians reported substantial improve-
ments in facilities and equipment in community hospitals, in the level of ob-
stetrical nursing, and in coordination of regional perinatal services.
Feasibility in 1980 is not an issue. For example, in the Cleveland region,
64 percent of all hospitals participate fully in the regional network, and 76
percent of all annual pregnancies and births are in the system.
How well the regional plan is working to anticipate poor outcome is re-
flected in changes in the number and proportion of high-risk mothers who
are referred to perinatal centers before delivery (such patients usually being
described as maternal transports or transfers). In the first two years of re-
gionalizing perinatal care, sharp increases in the number of maternal trans-
fers have occurred. In Arizona, for example, the number of mothers trans-
ported before delivery to perinatal centers in Tucson and Phoenix was 300
in 1975, the first year of the program, and exceeded 600 in 1979.
As to the cost of regionalizing perinatal care, a regional information sys-
tem and a staff to provide consultative services to a region has been esti-
mated in one study to be about $20 per mother-infant pair, or $200,000 per
10,000 deliveries per year. This is an incremental cost offset to some extent
by the current cost to hospitals of maintaining obstetrical and neonatal re-
cords. Obviously, the cost is a tiny fraction of the cost of providing direct
perinatal services in a region.
I am unable to cite any studies relating to the evaluation of the efficiency
of regional perinatal care. But I believe that the case for regional perinatal
care presently rests on its presentation as a prudent investment in organizing
a system to improve standards of perinatal care and to assure access of the
pregnant woman and newborn to the level of care they require. Considering
34


the alternative, at best an informal centralized network, regional perinatal
care is a prudent investment.

It seems to me that the good news is that for the first time in an otherwise
dismal history of efforts to regionalize personal health services, there has
emerged from the medical professional sector vigorous support for regional
perinatal care. Another good feature of regional perinatal care, largely un-
appreciated, is its melding of the private and public sectors in a common
mission. I believe that the level of interest generated by regional perinatal
care in coordinating and integrating the resources and actions of both the
public and private sectors is unprecedented in our society.

When we consider the deep pockets of rural and urban failures of the na-
tion's perinatal delivery system, we should welcome their inclusion in an or-
derly network of perinatal care. Bringing the ghetto hospital and the iso-
lated rural hospital into the mainstream is clearly different from neglect.

Regional perinatal care is not a panacea, but it is a strategy that holds
much promise. Despite is apparent ubiquity, regional perinatal care is still
in its infancy and has far to grow before it will impact substantially on im-
proving the outcome of pregnancy. Unless joined closely with the social
support system, its benefits will be limited.

Regional networks of perinatal care can provide a substructure to which
multiple programs that provide an array of services to mothers and infants
can be affixed.

Perhaps the best feature of regional perinatal care is its unitary focus on
the individual patient, assessing her needs and bringing interventions into
place to reduce the risk of pregnancy to mother and infant. The success of
regional perinatal care is totally dependent on the strength of the partner-
ship that has created the network.

I believe that regional perinatal care offers the best opportunity to begin
to structure an organization of maternal and infant care that will begin to
deal with the complex interplay of social, medical and environmental fac-
tors that determine the outcome of pregnancy and early life; that it will start
to close the gap in outcome between the haves and the have-nots in the
society.

SOCIAL STRATEGY INFLUENCES

The Epidemiology of Adverse Outcomes
Godfrey Oakley, M.D.

There have been substantial reductions in the infant mortality rate in the
United States over the past 30 years, including continued improvement over
the last decade. Less attention, however, has been paid to trends in the ma-
jor childhood morbidities-birth defects, mental retardation and cerebral
palsy.

The best-studied trends are birth defects. Infant mortality due to con-
genital malformations has increased from 7 percent in 1916 to 18 percent in
                                          35


1977. Present birth defects and prematurity account for 40 percent, or
16,000, infant deaths each year.
Up-to-date trend data for birth defects are collected through the Birth
Defects Monitoring Program of Center for Disease Control. Each quarter,
the incidence of some 150 birth defects is monitored for approximately one-
third of all births. The majority of the categories have been stable since
1970, indicating that we are not making a great deal of progress in reducing
these problems. The lack of progress is mainly due to lack of effective in-
tervention strategies. Some large decreases are expected for several tube
defects as soon as maternal serum alphafetoprotein screening becomes
available.
Dramatic decreases were seen in the early 1970s for rhesus hemolytic
disease. The decrease has plateaued in the last few years and it is not known
how much lower the rate can go. Several cardiac defects have had an in-
creasing evidence reported since 1970 (patent ductus arteriosis and ven-
tricular septal defect).
The trends of major mental retardation have not been actively monitored
in the United States. It is likely that there has been little overall improve-
ment in this country as the rates reported from western countries over the
last 40 years have been consistently in the 3-5/l ,000 range. The largest and
most recent study from the United States-the Collaborative Perinatal
Study-had rates at the upper end of this range.
The prevalence of severe mental retardation has changed little, primarily
because concomitant with decreased infant mortality in general has come a
substantial improvement in survival of Down's syndrome babies-the most
prevalent known cause of major mental retardation. Another 20-25 percent
is due to single gene diseases.
Effective mental retardation prevention strategies have been implemented
over the last decade for congenital rubella syndrome, PKU, hypothy-
roidism, lead poisoning and rhesus hemolytic disease. These diseases ac-
count for less than 5 percent of mental retardation. Similarly, the preven-
tion of mental retardation from better prenatal and intrapartum care is
directed at the 10 percent of mental retardation due to these factors. Prog-
ress can be expected as our health care improves and particularly as prenatal
diagnosis for Down's syndrome and neonatal services for metabolic
diseases becomes available to an increasing proportion of pregnant women
and children.
There has been a great deal of concern about whether cerebral palsy
would increase with decreasing rates of infant mortality. The most recent
data for the United States is the Collaborative Perinatal Study which
showed no trend. Population studies of cerebral palsy in Sweden and
Australia have shown decreases in cerebral palsy parallel with decreases in
infant mortality in the 1950s and 1960s. There is some concern over data in
the early 1970s indicating that the rate could be increasing slightly.
The Collaborative Perinatal Study also pointed out that only nine percent
of the cerebral palsy is among those at highest risk-infants weighing 1,500

36


grams or less. The Study showed that more than half of children with
cerebral palsy were full-term infants. Prenatal factors can predict infant
mortality. The Collaborative Perinatal Study data showed, in contrast, that
some 60 prenatal factors could not distinguish among 50 children with
severe mental or physical handicaps and normal controls.

With data presently available, it is reasonable to conclude that the
dramatic decrease in infant mortality has not been accompanied by a similar
reduction in prevalence of birth defects and mental retardation. Cerebral
palsy, on the other hand, has decreased although there is concern about a
possible recent rise.

Demographic changes that focused our attention on teenage pregnancies
during the 1970s will lead to an increasing proportion and number of births
to women 35 and older in the next decade. We must be prepared to deal with
the expected near doubling in the number of babies born to women 35 and
older other the next decade.

We need to continue to monitor the trends in birth defects. We must
establish in the United States population-based studies to measure the
prevalence of major childhood disabilities- especially severe mental retar-
dation and cerebral palsy. Such studies would not only permit us to measure
the impact of various interventions, such as prenatal diagnosis, neonatal
screening and neonatal intensive care units, they would also permit the base
from which to conduct epidemiologic studies of the causes of these diseases.
We must remember that some of the predictors of, risk factors for, infant
mortality are not the same for major pediatric morbidities. Attention is
needed specially to defining the predictors of, and risk factors for, mor-
bidities.

Statewide Strategies for Developing Effective Perinatal Care
Systems
Stanlt!y Graven, M.D.

Development of statewide strategies to improve the delivery of perinatal
health care is a complex and intricate task. Each state and area has its own
unique set of problems and resources. While there are many different
strategies, there appear to be several principles or premises operative in
locations where strategies have proved highly successful. The following
operating principles or premises, which form a common thread, are pro-
posed as important to the process of developing a strategy to improve health
care for mothers and infants in an area as large as an entire state.
. People and institutions must be cultivated and encouraged to do things,
not ordered or directed. Very little is accomplished by executive orders or
centralized administrative directives.

  . Areas or regions should be of manageable size and fall into logical
areas which provide some common basis for addressing problems and
developing solutions. Relatively little is accomplished through approaching
the State as a whole.

37


. Constituencies and coalitions must be developed within each area and
problems must be divided into manageable-sized component parts.

. Efforts should be focused on achieving small but long-term or perma-
nent gains. Major thrusts usually die for lack of broad support and most
long-term gains involve changes in peoples' attitudes and care practices.

. Sequence and timing are usually crucial for success-some issues and
problems need to be left alone for periods of time while others need to be
addressed promptly while the opportunity exists.

. Finding and involving the right people is essential. Plans and activities
should focus on what people and institutions can do. Far too many plans
and programs focus on legislating what individuals and institutions cannot
or should not do. Most have the potential to do much more than they are
presently doing, given support and encouragement.

. Solutions to care problems must involve a chemistry of resources, a
partnership between private and public resources, perinatal centers and
community hospitals and professional disciplines and the recipients of care.

. Professionals and patients do care, none wants adverse outcomes. Most
health professionals, however, are working hard to keep up with often very
unrealistic workloads and are doing a very reasonable job. What is often in-
terpreted as opposition or indifference is fatigue, stress or inability to take
on one more problem or issue.

. Health care for mothers and infants is closely tied to family, culture,
and religion and should be delivered as close to home and support systems
as is possible.

Among the components that should be included in the development of a
statewide strategy: regional or area resource perinatal centers; health care
institutions of varying capabilities; health professionals; community institu-
tions and organizations; agencies that administer funds and programs and,
of course, recipients of care. Any strategy must incorporate these six com-
ponents and how they are involved, linked, motivated and supported will
determine the shape of the strategy as well as its likelihood of success.

Data Systems and Information as Tools for Making the System
Operate more Effectively

Alfred Brann, M.D.

Perinatal surveillance is a dynamic process through which data on the oc-
currence and distribution of perinatal events in a defined population are
collected, tabulated, analyzed and disseminated. Because of improved
knowledge and techniques today, epidemiologic data of this kind is more
important than ever before in the effort to improve maternal and child
health systems.
38


As long ago as 1862, Dr. Little pointed out a causal link between sub-op-
timal perinatal care and negative outcomes in a report entitled "On the In-
fluence of Abnormal Parturition, Difficult Labors, Premature Births and
Asphyxia Neonatorum, on the Mental and Physicial condition of the Child,
especially in Relation to Deformities."
Since that time, there has been a continuing need, variably met, for the
collection of adequate data to delineate factors in sub-optimal perinatal
care that lead to poor outcomes. Today there is a need for an on-going peri-
natal care survillance system. Surveillance has evolved from monitoring the
individual with a specific disease to the present monitoring of the health
status of the population or populations and factors which influence it. Data
collection has, in the past, shed light on maternal and infant health.
For example, it has been pointed out that low birthweight rates from the
Renaissance to the early 1900s were approaching the rates of today's middle
and upper-middle income groups in the United States. Although the data
are relatively crude, they do suggest that birthweights in early times were
improving, long before the availability of modern technology and tech-
niques in perinatal care.
Surveillance has also shown us that the United States has the lowest birth-
weight-specific neonatal mortality rate in the world, but not the lowest
general neonatal mortality rate. Sweden has the lowest general neonatal
mortality rate in the world. When one examines these two statements, it is
important to differentiate between birthweight-specific neonatal mortality
rate and neonatal mortality rate. In Sweden, for example, we find the
lowest neonatal morality rate and a very low low-birthweight rate. This tells
us that an American baby of any weight has a better chance to survive than
one in Sweden. This also suggests that our ability to care for neonates has
progressed to great heights but that our ability to help mothers reach full
term has not improved in the past 20 years, as it has in Sweden. Through
this bit of information, we now see clearly that if we are going to reduce in-
fant mortality we must now concentrate on reducing low birthweight rates
rather than placing emphasis on keeping smaller and smaller babies alive.
The progress in reducing infant mortality to 9 per 1,000 by 1990 is going
to be very difficult in that there now exists a unique problem - pockets of
high infant mortality. This fact alone makes it mandatory to have a peri-
natal surveillance system which: can provide an accurate and detailed defi-
nition of perinatal problems; can reflect changes in the epidemiology of
perinatal problems; can provide data for evaluation of infant morbidity, ef-
fectiveness of programs and services, and allocation of resources; and can
indicate priorities for research that will lead to prevention of future prob-
lems.
My overriding recommendation would be for the establishment of a State
and/or subarea perinatal surveillance system along with the training of peri-
natal epidemiologists who could collect, analyze and distribute on a timely
basis, perinatal information and data on infant morbidity.

                                           39


THE NEEDED RESOURCES

Public/Private Financing of Maternal and Child Health Care
Stanley 8. Jones

Although insurance and financing systems for health care are extremely
diverse, it is possible to distinguish five basic methods of financing health
care for pregnant women and children: private payment, federal grants,
Medicaid, public provider and voluntary giving. One can consider several
kinds of changes that might lead to more desirable health care for children
and pregnant women: (1) modification in the present private insurance
system; (2) improving Medicaid as an insurer of health services for poor
women and children; and (3) giving State governments substantial new roles
in using public providers, grantees and others in the planning and start-up
of community resources for care, in providing selective preventive and
related services and in ensuring and coordinating appropriate utilization of
care.

The objective is the establishment of an expanded government financing
role only when private insurers and providers are unable or unlikely to meet
the need. Although many changes might be made to improve the system, the
following are just a few that could be considered in connection with more
comprehensive revisions.

In the private system, all health insurance plans might be required to of-
fer as an option or to actually include a standard set of services for children
and pregnant women established by law, and changes made based on con-
tinuing review by the Secretary of Health and Human Services and recom-
mendations of an Advisory Council on Health Insurance for Children and
Pregnant Women. The standard set of services would include specified high
priority preventive, prenatal and postnatal services and specified well-child
care as mandatory minimums in every insurance policy sold.

The Medicaid program might be amended to require States to cover both
mandatory and voluntary standard benefits without deductibles or coinsur-
ance (similar to the CHAP proposal) and to reimburse providers at rates
comparable to those used by private insurers without limits on amount, du-
ration and scope, except as set by the Advisory Council. Medicaid eligibility
requirements might be changed to require States to include all children
(through age 18, for example) and all pregnant women who meet a uniform
income standard.

Recipients of federal and federal-state grants for health services and pub-
lic providers who receive federal funds might be required to negotiate
"enrollment agreements" and "participating provider agreements" with
Medicaid and private insurers, HMOs and self-insurers who insure a signifi-
cant number of children and pregnant women in their area. They might also
offer such services as they are qualified to offer to all pregnant women and
children who seek services and collect for all covered services from

40


Medicaid and private insurers as broadened by this proposal in accordance
with the rule for enrolling and/or participating providers.

Highlights from the Report of Select Panel for the Promotion
of Child Health: Needed Maternal and Child Health Services

Lisberh B. Schorr

The analysis, findings and recommendations of the Select Panel cover an
extremely wide range of issues, including risks in the physical environment,
health behavior, nutrition and health research, as well as the organization,
financing and delivery of health services.

This presentation focuses on that aspect of our work which dealt with the
personal health services needed by pregnant women, infants, children and
adolescents.

The "needed services" identified by the Panel include not only tradi-
tional medical services, but a broad array of services to repond to health
problems with major social and behavioral components. The Report
focuses mainly on services that are preventive and typically delivered
through primary care systems. This orientation stems from the Panel's
mandate and from a belief that many of the strategies most likely to
decrease overall mortality and morbidity in mothers and children lie in the
domain of preventive services and primary care.

The process of defining needed services led the Panel to three major find-
ings. First, and most important, the Panel identified three broad classes-of
services-prenatal, delivery and postnatal care; comprehensive health care
for children from birth through age five; and family planning services/that
are so clearly effective, and so essential to good health, that no one needing
these services should be without them. The Panel concluded that access to
these basic minimal services be systematically and universally assured. Na-
tional health policy must move from attempts to make these services more
available to a much more active posture of assuring access. Needed action
includes:

. Removal of all financial barriers to basic essential services, most im-
mediately by improvements in Medicaid, private insurance and grant pro-
grams;

. Strengthening provider arrangements to provide or mobilize a broad
range of services and to reach out into the community;
. Clear designation of ultimate responsibility among public agencies for
assuring availability and access to the basic essential services.
A second category of services which merits special attention includes
mental health and related psychosocial services, dental services, genetic
services and, especially, services that promote access to care. Although each
of these has unique attributes, they have in common an importance to
health and also the fact that they are not now adequately available, par-
ticularly to some of the groups most in need of these services.
                                            41


Third, a new mechanism must be created or mobilized to serve a variety
of functions aimed at improving the content, quality and availability of
health services for mothers and children-a Board on Health Services
Standards or similar body. One reason many needed services are unavail-
able or underutilized is that public and private third-party payers tend not
to finance them, and purchasers of third party payment programs are reluc-
tant to purchase coverage for these services, in part because of the nature of
the services. They are difficult to define precisely and their effectiveness ap-
pears closely related to circumstances under which they are provided, by
whom and in relation to what other services. To help provide information
on such issues, the Panel recommended that a Board on Health Services
Standards be created, or that existing institutions be strengthened and con-
solidated, to perform the following functions:
. Review and define health services that should be available to mothers
and children in light of new knowledge and changing health problems;
. Provide guidance to third-party payers and purchasers of health in-
surance regarding the effectiveness and appropriate use of a given service or
sets of services, and the circumstances under which such services should be
provided and financed.
o Provide information to third-party payers regarding the likely effects
of their payment policies and practices on the availability of needed serv-
ices, professional personnel, facilities and other health resources.
Targeting of services and funds, is emerging as an important theme of
this Workshop: it is essential to distinguish among various kinds of target-
ing. The implications of targeting resources on underserved geographic
areas, or on all children and pregnant women are very different from target-
ing programs to serve only those individuals and families which meet nar-
row definitions of medical, social or economic need. The pressures to allo-
cate scarce resources are very real, but must not glibly be translated into
ever more restrictive eligibility requirements that ultimately become barriers
to the receipt of prompt and appropriate services.
The costs of certain forms of targeting must be considered along with the
savings. Costs of targeting include the increased probability of a given in-
dividual falling through the cracks between programs, the lack of public
support for programs limited to the poor, and the expense of sorting and
resorting large numbers of families that move in and out of poverty and risk
status.
Thus it is possible to advocate, as the Panel did, targeting resources on as-
suring that a range of particularly effective services is available to all who
need them, and on programs to assure that resources are made available in
underserved areas. We concluded, on the other hand, that with regard to
long-term financing of personal health services, a program of universal enti-
tlement is decisively preferable to one directed solely at the poor. When
eligibility for a health financing program is tied to poverty status, the results
are so detrimental in terms of quality, continuity and appropriate use of

42


care, incentives toward economic independence, public support and admin-
istrative efficiency that the price of targeting, in this instance, is too high.

Human Resources for Delivering Needed Maternal
and Child Health Services
Morris Green, M.D.

Of some 3.3 million infants born alive annually in the United States, ap-
proximately 5 million (1:7) are considered to be at high risk and, of this
number, approximately 50,000 infants die before the age of one year. In ad-
dition, 33,000 fetal deaths occur before or at birth and some 250,000 infants
are born annually with congenital anomalies. The incidence of prematurity
and low birth weight babies is twice as high for black as for white infants.

Of the projected 3.67 million women expected to become pregnant in
1980, 980,000 live in poverty: 560,000 of these women are on Medicaid and
420,000 women are below the poverty line but are not on Medicaid. The
patterns of prenatal care vary widely among mothers of different social,
racial, educational and demographic backgrounds. Black mothers con-
sistently receive less prenatal care than white mothers; 58 percent of women
with less than a high school education received prenatal care in 1977, com-
pared to 82 percent of those with more than a high school education; preg-
nant adolescents are at the highest risk of receiving no or only third
trimester prenatal care and unmarried mothers have one-fourth the prenatal
care received by married mothers.

By increasing access of mothers and children to comprehensive services,
current and past Federal and foundation initiatives in maternal and child
health have made major contributions to the reduction of infant mortality.
But inequities in services remain. Many mothers and infants, especially
those of low income, are unserved either because services are unavailable or
not properly utilized. Deficiencies include: limitation in personnel; uneven
geographic distribution of personnel; low Medicaid reimbursement; patient
disinterest or attitudinal barriers due to life experiences; lack of community
understanding and support; fragmentation of programs and lack of coor-
dination among community health and human service agencies; lack of edu-
cation, outreach and followup activities; and inadequate adolescent health
services.

In considering possible solutions to the situation, certain assumptions
should be made, such as: improved access to and utilization of needed
health services would lead to better health of mothers and infants; adequate
prenatal care is associated with a reduction in birth of premature and other
low birthweight infants; and while the ultimate goal of accessibility to ap-
propriate health services for all is a valid one, population groups with the
greatest needs should receive priority.

The system of health care services should be a cooperative one, integrat-
ing at administrative, service and educational levels the public and volun-
tary agencies, private and voluntary sectors and both the providers and
                                           43


recipients of services. I would propose the term "District Health
Cooperative for Mothers and Infants" (HCMI). The precise way in which
HCMIs would be formed would depend on local settings and whether urban
or rural.

Services would include treatment, prevention and health promotion for
pregnant women and infants during the first year of life and services would
be organized by districts. In the development of individual cooperatives,
planning would attend not only to the problems and vulnerabilities in the in-
dividual patients, families and the community, but also to their strengths
and potential resources. The package of services to be delivered would be
determined in each district within national guidelines.

Among program elements to be included in cooperatives would be: pre-
natal care, including risk assessment and management; access to secondary
and tertiary consultation, ambulatory or inpatient, for assessment and
treatment; linkages to hospitals for labor, delivery and newborn care; out-
reach to ensure that mothers and infants receive the care they need;
followup; adolescent health and family planning services; nutritional pro-
grams; mental health and psychologic support services; health education;
education for parenting and home visits in early infancy.

Incentives would be offered for participation-patients receiving increas-
ed food stamps or other allowances; professionals, tax incentives or salary
supplement; and individual citizens or corporations would receive tax incen-
tives. Funding for cooperatives would be a blend of federal grants, local
governmental funds, United Way, individual and corporate gifts, fund-
raising events and grants from voluntary health agencies.

Staffing of cooperatives would depend on availability of professionals,
but use of nurse practitioners, public health nurses and nurse-midwives
linked to physician backup would be explored. In areas without obstetri-
cians or pediatricians, family practitioners would be utilized.

44


APPENDIX A
PARTICIPANTS

Mary Ellen Avery, M.D.
Physician in Chief
Children's Hospital Medical Ctr.
Boston, MA

Kathryn Barnard, Ph.D.
Professor of Nursing
University of Washington
Seattle, WA

Alfred Brann, M.D.
Director of Newborn Medicine
Emory University
Atlanta, GA

Dorothy Bryan, Ph.D.
Program Director
National Council of Negro Womec
Washington, DC

Alton B, Cobb, M.D.
State Health Official
Mississippi State Board
of Health
Jackson, MS

Marvin Cornblath, M.D.
Special Asst. to Scientific Director
National Institute of Child Health
and Human Development,
NIH, PHS, DHHS
Bethesda, MD

George C. Cunningham, M.D.
Chief, MCH Branch
State Dept. of Health Services
Berkeley, CA
Martha A. Darling
Legislative Assistant to
Senator Bradley
Washington, DC

Ezra Davidson, Jr., M.D.
Chairman OB/GYN
9rew Postgraduate Medical School
Los Angeles, CA

Karen Davis, Ph.D.
Administrator, Health Resources
Administration, PHS, DHHS
Washington, DC

Sara DePersio, M.D.
Chief, MCH Medical Prog.
Oklahoma State Health Dept.
Oklahoma City, OK

Johanna T. Dwyer, D.Sc.
Director, Frances Stern
Nutrition Ctr.
Boston, MA

Joanne Fischer
Chairwoman, National
Women's Health Network
Philadelphia, PA

Florence Foelak
Staff Assistant, Health Resources
Adm., PHS, DHHS
Hyattsville, MD

Henry W. Foster, M.D.
Chairman, Dept. OBXYN
Meharry Medical College
Nashville, TN

Carol P. Galaty
Special Project Director
Office of the Surgeon General,
PHS, DHHS
Washington, D.C.

45


Edward Gibbs, M.D.
Professor
University of Texas
Medical School
San Antonio, TX

Mitch Ginsberg, Ph.D.
Dean of School of Social Work
Columbia University
New York, NY

Stan Graven, M.D.,
Professor, Child Health
University of Missouri
Columbia, MO

Morris Green, M.D.
Chairman, Dept of Ped.
The Indiana University
School of Medicine
Indianapolis, IN

Robert E. Greenberg, M.D.
Chairman, Dept. of Ped.
University of New Mexico
School of Medicine
Albuquerque, NM

Stanley I. Greenspan, M.D.
Chief, Mental Health
Study Center
National Institute of Mental Health,
ADAMHA, PHS, DHHS
Adelphi, MD

Margaret Heagarty, M.D.
Director, Pediatrics
Harlem Hospital Center
New York, NY

Ruby Hearn, Ph.D.
Assistant Vice President
Robert Wood Johnson Foundation
Princeton, NJ

Claire Ho, R.D.,
MCH Nutrition Consultant
Hawaii Dept. of Health
Honolulu, HI

Don Hopkins, M.D.
Asst. Dir., Intl. Health
Centers for Disease Control,
PHS, DHHS
Atlanta, GA

Vince Hutchins, M.D.
Director, Office for Maternal
and Child Health,
HSA, PHS, DHHS
Rockville, MD

Thomas Jacobsen, M.D.
United Clinic, P.C.
Hettinger, ND

Juel Janis, Ph.D.
Special Asst. to the Assistant
Secretary for Health, PHS, DHHS
Washington, DC

Derrick Jelliffe, M.D.
Professor
UCLA, School of Public Health
Los Angeles, CA

Kenneth Johnson, M.D.
Director, Health Res. Serv. Ctr.
Kingston Hospital
Kingston, NY

Stan Jones
Vice President
Blue Cross-Blue Shield Assn.
Washington, DC

Carole Kauffman
White House Conference
on Children and Youth
Washington, DC

Elleen Kennedy, Ph.D.
Chief, Office of Policy Planning
and Evaluation, USDA
Washington, DC

46


Woodie Kessel, M.D.
Special Asst. to the Assistant
Secretary for Health, PHS, DHHS
Washington, DC

Joel Kleinman, Ph.D.
Deputy Assoc. Director
for Analysis
National Center for Health
Statistics, PHS, DHHS
Hyattsville, MD

Mary Grace Kovar
Special Asst. for Data Policy and
Analysis
Interview and Exam. Survey Prog.
NCHS, PHS, DHHS
Hyattsville, MD

Norman Kretchmer, M.D.
Director, National Institute of
Child Health and Human
Development NIH, PHS, DHHS
Bethesda, MD

Robert C. Kreuzburg, MD
Maternal and Child Health
Program Coordinator, Indian
Health Service HSA, PHS, DHHS
Rockville, MD

Richard Krugman, M.D.
Institute of Medicine Fellow
Washington, DC

Mort Lebow
Director, Office of Public
Affairs, PHS, DHHS
Washington, DC

Brian Little, M.D.
Secretary American GYN Society
Direct. and Prof. Dept. of
OB/GYN University Hospital of
Cleveland
Case Western Reserve University
Cleveland, OH

George A. Little, M.D.
Chairman, Dept. of MCH
Dartmouth Medical School
Hanover, NH

George I. Lythcott, M.D.
Administrator, Health Services
Administration, PHS, DHHS
Rockville, MD

Michael McGinnis, M.D.
Deputy Asst. Sec. for Health and
Asst. Surgeon General,
PHS, DHHS
Washington, DC

Peggy McManus
Senior Research Associate
Health Policy Program
University of California
Washington, DC

Marie C. Meglen, CNM
Director, Improved
Pregnancy Outcome
S.C. Dept. of Health and
Environmental Control
Columbia, SC

Irwin R. Merkatz, M.D.
Director, Cleveland Reg.
Perinatal Network
Case Western Reserve
University Hosp. of Cleveland
Cleveland, OH

Sister Jeanne Meurer
Professor of Nursing
St. Louis University
School of Nursing
St. Louis, MO

Susan Morgan
Acting Director, Div. of Health
Resources and Services Analysis
Office of the Assistant Secretary for
Planning and Evaluation, DHHS
Washington, DC

47


Hugo H. Muriel, M.D.
Commissioner, City of Chicago
Dept. of Health
Chicago, IL

Saad 2. Nagi, Ph.D.
Mershon Professor of
Sociology & Public Policy
Ohio State University
Columbus, OH

Buford Nichols, M.D.
Director of Children's Nutrition
Research Center
Baylor College of Med.
US Department of Agriculture
Houston, TX

Paul Rettig

Staff Dir., Ways and Means
Subcommittee on Health
U.S. House of Representatives
Washington, DC

George Ryan, Jr., M.D.
President Elect, ACOG
Dept. OB/GYN
Univ. of Tennessee
Memphis, TN
Authur Salisbury, M.D.
Vice President for Medical Services
March of Dimes Birth Defects
Foundation
White Plains, NY

Ervin Nichols, M.D.           Clara Schiffer
Director of Practice          Office of the Assistant Secretary for
ACOG               Planning and Evaluation, DHHS
Washington, DC           Washington, DC

Lulu Mae Nix, Ed.D.
Director, Office of Adolescent
Pregnancy Programs,
PHS, DHHS
Washington, DC

Godfrey Oakley, M.D.
Chief, Birth Defects Br.
Bureau of Epidemiology, Centers
for Disease Control, PHS, DHHS
Atlanta, GA

Lisbeth Schorr
Chairperson, Select Panel for
the Promotion of Child Health
Washington, DC

Sam Shapiro
Director, Health Services,
Research and Development Center
The Johns Hopkins Medical
Institutions
Baltimore, MD

Gilbert S. Omenn, M.D.       Aaron Shirley, M.D.
Assoc. Dir. for Human        Project Director
Resources, Vet. & Labor       Jackson-Hinds Comprehensive
Office of Management and Budget    Health Center
Washington, DC            Jackson, MS

Ernest Peterson            Faustina Solis, M.S.W.
Acting Deputy Assistant        Professor
Secretary Population        Dept. of Community Medicine
Affairs, PHS, DHHS         Univ. of California-La Jolla
Washington, DC             La Jolla, CA

48


Susanne A. Stoiber
Deputy Asst. Sec. for Health
Planning and Evaluation,
PHS, DHHS
Washington, DC

Phyllis Stubbs, M.D.
Medical Director
Head Start Health Services
Washington, DC

Mary Tierney, M.D.
Acting Director, Office of
Child Health
Health Care Financing Adm.,
DHHS

Washington, DC

Theodore Van Itallie, M.D.
Sp. Advisor to the Surgeon
General on Human Nutrition and
Ex. Sec. of Nutrition Coordinating
Committee, DHHS
Washington, DC

Charlotte Wilen
Founding Chairperson
Council on Maternal and Infant
Health, State of Georgia
Atlanta, GA

Phyllis Zucker
Child Health Specialist
Office of the Asst. Secretary for
Health Planning, PHS, DHHS
Washington, DC

49


APPENDIX B

NEEDED SERVICES

(Excerpted from the Report of the Select Panel for the Promo-
tion of Child Health, Vol. I, 1980, pages 153-58.)

In reading the lists,* several important caveats and explanatory notes should be
kept in mind: First, the lists often describe a set of services preceded by the phrases
"such as," "as needed," or "as appropriate." These phrases are designed to convey
the notion that services must be tailored to an individual and take into account age,
stage of development, past history, present risk and so forth. The lists are not a prac-
tice manual, but rather a compendium of broad categories of services that should be
available and used to varying degrees and in varying combinations by an individual.
Second, the lists also use the phrase ". . . to include." This phrase is intended to sug-
gest that the units that follow are minimum components of a broad category, rather
than examples or possible items for inclusion. For example, the topics to be covered
in prenatal counseling-which in the list are preceded by the phrase "to
include" -are viewed by the Panel as essentially a minimum set. Third, the lists in-
tentionally avoid notations of periodicity-such as the desired frequency of health
examinations or specific immunization schedules. In general, the Panel believes that
the practice standards developed by such groups as the AAP and ACOG are most
adequate at present for those services for which they have recommended specific
schedules. Fourth, the age and developmental boundaries of the lists were somewhat
arbitrarily determined. Although they correspond to the boundaries of many other
lists of services reviewed, we recognize the inherent artificiality of such compartmen-
talization.

Health Services for Women of Reproductive Age, With a Special Focus on Services
Relevant to Reproduction

1.  Services for nonpregnant women that relate to the occurrence and course of
  future pregnancy
A. Diagnosis and treatmenta or referral and followup of general health prob-
   lems, both acute and chronic, that can adversely affect future pregnancy,
   fetal development, and maternal health such as:
   1. Sexually transmitted diseases
   2. Immune status (such as rubella)
   3. Gynecological anatomic and functional disorders
   4. Organic medical problems such as renal and heart diseases, hypertension,
     diabetes, and endocrine problems
   5. Inadequate nutritional status, including both under- and overweight
   6. Problems relating to fertility

50


7. Genetic risk (see I D)

8. Significant dental problems such as periodontal disease
9. Occupational exposures

B . Diagnosis and treatmentb or referral and followup of mental health and
behavioral problems, both acute and chronic, that can adversely affect
pregnancy, fetal development, and maternal health such as:
1. Alcohol abuse, drug addiction or abuse, other substance abuse, and
   cigarette smoking

2. Significant mental disorders such as schizophrenia and depression
C. Comprehensive family planning services. including:
1. Information, education, and counseling regarding family planning con-
  cepts and techniques, and other issues such as the importance of prenatal
  care, and risks to mother and child of childbearing at extremes of the
   reproductive age span

2. Physical examination, including breast and pelvic examination, as in-
dicated, and tests such as a Papanicolau smear, G.C. culture, urinalysis,
and serological examination as appropriate
3. Provision of family planning methods and instruction regarding their use
4. Pregnancy testing with attendant counseling and referrals as appropriate
(including for prenatal services, adoption, and abortion)
5. Infertility services, including counseling, information, education, and
  treatment

6. Sterilization services, including counseling, information, education, and
  treatment

D. Genetic screening and related services as needed to detect persons at risk,
with counseling and referral as appropriate
E. Home health and homemaker servicesd

f.  Services in the prenatal period
A. Early diagnosis of pregnancy
B. Counseling regarding plans for pregnancy continuation
  1. For those electing to carry to term, referral for and provision of prenatal
    care and of adoption services if indicated. Referral to childbirth prepara-
     tion classes as desired

2. For those electing abortion, referal to and provision of first or second
  trimester abortion, including family planning counseling
C. Prenatal care services including:
  I. History (general medical, social and occupational, family and genetic
   background, health habits, previous pregnancies, and current pregnan-
    CY)

2. General physical examination including blood pressure, height and
weight, and fetal development

3. Laboratory tests as appropriate, such as VDRL, Papanicolau smear, G.
C. culture, hemoglobin/hematocrit, urinalysis for sugar and protein,
Rh determination and irregular antibody screening, blood group deter-
mination, and rubella test

4. Diagnosis and treatment= or referral and followup of general health
problems, both acute and chronic, preexisting or arising during the
prenatal period, that can adversely affect pregnancy, fetal development,
or maternal health

51


5. Diagnosis and treatmentb or referral and followup of mental health
problems, both acute and chronic, preexisting or arising during the
prenatal period, that can adversely affect pregnancy, fetal development,
or maternal health

6. Nutritional assessment and servicesc as needed. Provision of vitamin,
iron, and other supplements as appropriate
7. Dental services with special attention to detection and treatment of
periodontal disease

8. Screening, diagnosis (including amniocentesis), and counseling with
followup for selected fetal genetic defects (such as neural tube defects,
Down's syndrome, Tay-Sach's disease and sickle cell disease) with abor-
tion services available

9. Services to identify and manage high-risk pregnancies to include provi-
sion of appropriate prenatal and perinatal care services for labor,
delivery, and newborn care

10. Counseling and anticipatory guidance with followup and referrals as
needed regarding:
a. Physical activity and exercise
b. Nutrition during pregnancy, including the importance of adequate
   but not excessive weight gain

c. Avoidance during pregnancy of smoking, alcohol and other drugs;
and of environmental hazards including radiation, hazardous
chemicals, and various workplace hazards
d. Signs of abnormal pregnancy and of the onset of labor
e. Preparation of the woman (and her partner where appropriate) for
labor and delivery, including plans for place of delivery and feelings
about use of anesthesia

f. Use of medication during pregnancy
g. Infant nutritional needs and feeding practices, including breast
feeding
h. Child care arrangements
i. Parenting skills, including meeting the physical, emotional, and in-
tellectual needs of the infant, with specific appraisal to detect parents
at risk of child abuse or neglect
j. Planning for continuous and comprehensive pediatric care following
delivery, including arrangements for a pediatric antenatal visit to
link the family to pediatric care

   k. Emotional and social changes occasioned by the birth of a child, in-
    cluding changes in marital and family relationships, the special needs
    of the mother in the postpartum period, and preparing the home for
      the arrival of the newborn
    1. Other relevant topics in response to patient concern
D. Home health and homemaker servicesd

III. Services in the perinatal and postpartum periods
  A. Assessing the progress of labor and the condition of the mother and fetus
   throughout labor
  B. Medical services during labor and delivery for diagnosis and management of
   conditions threatening the mother and/or infant, including the availability
    of a Caesarean birth operation when indicated

52


C. Delivery of the baby by a qualified professional in a facility that has SerViCeS
needed to manage medical emergencies of the mother and/or newborn, or
has ready access to such services

D. Diagnosis and treatment8 or referral and followup of general health prob-
lems, both acute and chronic, preexisting or arising during the perinatal and
postpartum periods that can adversely affect the mother's child-caring
abilities.

E. Diagnosis and treatmentb or referral and followup of mental health or
behavioral problems, both acute and chronic, preexisting or arising during
the perinatal and postpartum periods (including maternal depression) that
can adversely affect the mother's child-caring abilities.
F. Counseling and anticipatory guidance with referrals and followup as needed
regarding:

1,
2.
3.

8.
9.
10.
11.

Infant development and behavior
Infant nutritional needs and feeding practices, including breast feeding
Automobile restraints for infants and children, and general accident
prevention concepts (especially home accidents and accidental poison-
ing)
Infant stimulation and parenting skills, with specific appraisal to iden-
tify parents at risk of child abuse or neglect
Need for and importance of immunizations
Effect on children of parental smoking, use of alcohol and other drugs,
and other health-damaging behaviors
The importance of a source of continuous and comprehensive care for
both mother and child, including identification of available resources to
help with such problems as illness in the newborn or breast feeding dif-
ficulties

Recognition and management of illness in the newborn
Hygiene and first aid
Child care arrangements
Other relevant topics in response to parental concern

G. Home health and homemaker services"
H. Routine postpartum examination, with referrals and followup as needed, in-
cluding:
  1.  Laboratory services as appropriate
2. Family planning services
  3. Counseling as appropriate regarding the topics noted in III F above and
   other relevant topics in response to parental concern

IV. Health education regarding such topics as:
  A. Items in II(C)10 and III F above
B. Developing positive health habits
C. Using health services appropriately
D. Using community health resources such as WIC, food stamps, welfare and
   social services that bear significantly on health status

V. Access-related services:

A. Transportation services as appropriate including
  1. Emergency medical transport services for both mother and newborn
  2. Transportation services associated with a regionalized perinatal and/or
   tertiary care network
  3. Transportation services that facilitate obtaining needed health services
B. Outreach services
C. Hotline, translator, and 24-hour emergency telephone services
D. Child care services to facilitate obtaining needed health services

53


Health Services for Infants in the First Year of Life

I.  Services in the neonatal period
  A. Evaluation of the newborn infant immediately after delivery and institution
   of appropriate support procedures such as nasal/oral suctioning
B. Complete physical examination, including length, weight, and head cir-
    cumference

C. Laboratory tests to screen for genetically-determined diseases including
PKU, hypothyroidism and galactosemia
D. Diagnosis and treatmenta or referral and followup of general health prob-
lems, both acute and chronic

E. Preventive procedures to include
  1.  Gonococcal eye infection prophylaxis
  2.  Administration of vitamin K
F. Services of a newborn intensive care unit as appropriate
G. Nutritional assessment and servicesC and supplementation as needed
H. Bonding and attachment support activities including provision for extended
contact between parents and their infant immediately after delivery and,
where desired by the parents, rooming-in arrangements or the equivalent
I. Arrangements for continuous, comprehensive pediatric care for the
newborn following discharge from the hospital
J. Home health servicesd

Il.  Services during balance of first year of life
  A. Periodic health assessment to include:
     1.  History and systems review (general medical and social, family and
     genetic background, with items of inquiry determined by age,
     developmental stage, and likelihood of potential problems)
     2.  Complete physical examination to include:
     a. Height and weight
      b. Head circumference

   c. Developmental-behavioral assessment
   d. Vision and hearing evaluation
3. Screening and laboratory tests as indicated, including
   hemoglobin/hematocrit and tuberculin skin test; and, for infants at
   risk, such procedures as lead poisoning, parasite, and sickle cell screen-
   ing
  4.  Nutritional assessment and servicesC and supplementation as needed (in-
   cluding provision of such supplements as iron and vitamin D, and
   fluoride if community water supply is not fluoridated
B. Immunizations according to nationally recognized standards
C. Diagnosis and treatment' or referral and followup of general health prob-
lems, both acute and chronic
D. Home health servicesd

111. Services for families during infant's first year of life
  A. Counseling and anticipatory guidance with referrals and followup as needed
   regarding:
    1. Infant development and behavior
     2. Maternal nutritional needs, especially if breast feeding, and infant nutri-
     tional needs and feeding practices
    3. Automobile restraints for infants, and general accident prevention con-
     cepts (especially home accidents and accidental poisoning)
   4. Infant stimulation and parenting skills, with specific appraisal to iden-

54

tify parents at risk of child abuse or neglect


    5. Need for and importance of immunizations
    6. Effect on children of parental smoking, use of alcohol and other drugs,
     and other health-damaging behaviors
    7. The importance of a source of continuous and comprehensive care for
     mother and child, including identification of available resources to help
     with such problems as sudden illness or breast feeding difficulties
    8. Recognition and management of illness
    9. Hygiene and first aid
   10. Child care arrangements
   11. Other relevant topics in response to parental concern
B. Counseling and provision of appropriate treatmenPb and/or referral to ap-
   propriate services (including home health and homemaker servicesd) as need-
   ed for parents:
     1.  Who have chronic illnesses, handicapping conditions, alcohol or drug
     problems, mental health problems (including maternal depression) or
     other health problems that seriously affect their capacity to care for the
       infant
    2.  Whose infant is seriously ill
    3.  Whose infant has a chronic illness or handicapping condition
    4.  Whose infant is or is about to be hospitalized
IV. Health education regarding such topics as:
  A. Items in Ill A above

  B. Developing positive health habits
  C. Using health services appropriately
D. Using community health resources such as WIC, food stamps, welfare and
   social services that bear significantly on health status
V.  Access-related services (see section V, Health Services for Women of Reproduc-
  tive Age)

*In the hsts:

`Services for both acute and chronic medical conditions include inpatient and outpatient services, clinic
and physician office serwces. emergency services, laboratory and X-ray services, provision of prescribed
drugs and vaccines, medical supplies and rehabilitation services.
bServices for both acute and chronic mental health conditions include inpatient and outpatient hospital
services, long-term psychiatric care, clinic and physician office services, counseling and anticipatory
gwdance, crisis intervention services. laboratory services, and provision of prescribed drugs.
`Nutrition serwces include screening/assessment of nutritional status; dietary counseling to assist people to
meet their normal and therapeutic nutrition needs; nutrition education; and provision of, or referral IO.
resources needed to improve or maintam nutritional health, i.e., supplemental food assistance, special
feeding equipment, and food serwce programs.

dHome health serwcs include the provision of medical, nursing, dietary. and rehabilitative services m the
home; homemaker services including assistance for the family in routine household responsibdities when ill-
ness or disability mterferes wth such functions.

55