A History of Child Health Equity Legislation in the United States

 
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A History of Child Health Equity Legislation in the United States

                                              Peter C. van Dyck, MD, MPH, FAAP

ABSTRACT. The Issue. The mission of the Maternal                       tion in the United States provides perspective as to
and Child Health Bureau (MCHB) is comprehensive in                     the genesis of current MCHB goals and insight into
scope and establishes the capacity, structure, and func-               future goals and objectives of the MCHB.
tion for the MCHB to continually improve the health and                   During the 19th century, states and private agen-
well-being of pregnant women and children. The MCHB                    cies assumed responsibility for the health and social
works in partnership with states and has broad authority
to improve access to care and ensure the provision of
                                                                       well-being of special groups of children. However,
quality preventive and primary care services. Specific                 the concept of a partnership between the states and
provisions of legislation establish the framework for ac-              the federal government to improve the health of
complishing this mission. With the increasing recogni-                 mothers and children did not appear until 1912,
tion of the social, economic, and environmental determi-               when the federal government established the Chil-
nants of child health and the inequities that exist in                 dren’s Bureau to promote the welfare of children
access and quality of care for children, the Maternal and              with special needs.
Child Health Bureau (MCHB) has set the following 3                        In 1921, the Maternity and Infancy (Sheppard-
goals for year 2003: 1) To eliminate disparities in health             Towner) Act (PL 67-97) was passed and adminis-
status outcomes through the removal of economic, social,
                                                                       tered by the Children’s Bureau (1921–1929). Shepp-
and cultural barriers to receiving comprehensive, timely,
and appropriate health care; 2) To ensure the highest                  ard-Towner was the first federal grant-in-aid
quality of care through the development of practice guid-              program to states for health, establishing the princi-
ance and data monitoring and evaluation tools; the use of              ple of public responsibility for child health. The act
evidence-based research; and the availability of a well-               was controversial and was labeled as radical and
trained, culturally diverse workforce; and 3) To facilitate            socialistic by its critics. The American Medical Asso-
access to care through the development and improve-                    ciation, Catholic Church, and Public Health Service
ment of the maternal and child health infrastructure and               were instrumental in having it repealed 8 years after
systems of care to enhance the provision of necessary,                 enactment. Because of a disagreement within the
coordinated, quality health care. Priority MCHB strate-                American Medical Association over its opposition to
gies to accomplish these goals include improving and
expanding 1) the cultural competence of providers (in
                                                                       this legislation, the American Academy of Pediatrics
particular to decrease sudden infant death syndrome                    (AAP) was formed in 1930.1
[SIDS] among minorities), 2) emergency medical services                   It took the Great Depression to demonstrate how
for children, 3) health and safety in child care, 4) quality           dependent children are on protection against eco-
of primary pediatric care, and 5) the providing of every               nomic hazards and to produce the rich harvest of
child with a medical home. Pediatrics 2003;112:727–730;                children’s programs that came with the Social Secu-
history, child health programs.                                        rity Act in 1935 (Vince Hutchins, MD) and other
                                                                       legislation thereafter. Several key legislative actions
ABBREVIATIONS. MCHB, Maternal and Child Health Bureau;                 highlight the subsequent evolution of maternal and
SIDS, sudden infant death syndrome; AAP, American Academy of           child health programs in the United States.
Pediatrics; EMSC, Emergency Medical Services for Children;             • The 1930s: Title V of the Social Security Act autho-
HCCA, Healthy Child Care America.
                                                                          rized grants-in-aid to states for maternal and child
         HISTORY OF CHILD HEALTH POLICY
                                                                          health programs (Title V, Part 1), including ser-
                                                                          vices for children who are crippled (Title V, Part 2)

H
         ealth policy in the United States is charac-                     and child welfare services (Title V, Part 3). The
         terized by incremental change leading to pe-                     Crippled Children’s Services program was the
         riodic paradigm shifts in the focus and di-                      first US program of medical care. It was based on
rection of public- and private-sector activities.                         the principle of continuing federal grants-in-aid to
Elimination of health disparities, as presented in the                    the states.
first of the 3 current Maternal and Child Health                       • The 1940s: The Emergency Maternity Infant Care
Bureau (MCHB) goals, is an example of such a shift.                       program established a service delivery system to
Understanding the evolution of child health legisla-                      provide free and complete maternity and infant
                                                                          health care for the wives and infants of the 4
From the Maternal and Child Health Bureau, Washington, DC.                lowest grades of servicemen.
Received for publication Mar 14, 2003; accepted Mar 14, 2003.          • The 1980s: The Maternal and Child Health Ser-
Address correspondence to Thomas Tonniges, MD, FAAP, American Acad-       vices Block Grant (1981) consolidated 7 categorical
emy of Pediatrics, Department of Community Pediatrics, 141 Northwest
Point Blvd, Elk Grove Village, IL 60007. E-mail: ttonniges@aap.org
                                                                          child health programs into a single program of
PEDIATRICS (ISSN 0031 4005). Copyright © 2003 by the American Acad-       formula grants to states supported by a federal
emy of Pediatrics.                                                        special projects authority. In addition, states

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                                                                                                                           727
adopted injury prevention as a public health is-               Newborn Screening
  sue—the Emergency Medical Services for Chil-                     The MCHB has supported the development of
  dren (EMSC) program.                                           newborn metabolic screening and newborn hearing
• The 1990s: The 1990s ushered in an era focused on              screening. However, the array of screening tests per-
  assessing unmet service needs, improving ac-                   formed by each state varies and changes periodi-
  countability in program performance, and                       cally. These inconsistencies reflect differences in
  strengthening federal-state partnerships, eg, the              community values, state political and economic en-
  Healthy Start program (1991) and the Child Health              vironments, and public health technical capabilities.
  Improvement Act (1997). These programs targeted                In response to these inequities, the MCHB has
  long-standing national concerns about infant mor-              funded a number of initiatives, including the follow-
  tality and children who are uninsured                          ing:
                                                                 • The National Newborn Screening and Genetic Re-
               CURRENT PROGRAMS
                                                                   source Center to provide technical assistance to
  Current programs of the MCHB respond to the                      the states
contemporary understanding of the priority issues                • The development of standards for conditions to be
confronting children and families and the social de-               screened, national guidelines for informed con-
terminants of the well-being of children. The pro-                 sent, and retention of residual blood spots and
grams acknowledge and respond to the disparities                   their storage
and inequities confronting children’s health.                    • States to facilitate the integration of newborn
                                                                   screening programs and data systems with other
Cultural Competence                                                points of early identification of children with ge-
                                                                   netic conditions and other special health needs
   Improving cultural competence has become a ma-
                                                                 • Public health agencies and the private sector to
jor priority of the MCHB and is considered a prereq-
                                                                   ensure coordination of screening efforts
uisite to achieving equity in health systems. There is
                                                                 • The Consumer Network for Genetic Resource and
a compelling need to consider cultural competence
                                                                   Service Information to develop culturally appro-
to:
                                                                   priate communication strategies
                                                                 • Research and demonstration programs on imple-
• Respond to current and projected demographic                     menting newborn hearing screening technologies
  changes in the United States
• Eliminate long-standing disparities in the health              Bright Futures Guidelines
  status of people with diverse racial, ethnic, and
                                                                    Bright Futures is a vision, philosophy, set of expert
  cultural backgrounds
                                                                 guidelines, and a practical developmental approach
• Improve the quality of services and health out-
                                                                 to providing health supervision for children of all
  comes
                                                                 ages. Bright Futures is dedicated to the principle that
                                                                 every child deserves to be healthy and to have a
  States are required, through their block grant per-
                                                                 trusting relationship among health professionals, the
formance measures, to report on their progress to-
                                                                 child, the family, and the community as partners in
ward achieving cultural competence in their pro-
                                                                 health practice. The mission is to promote and im-
grams. Similar measures are being instituted for
                                                                 prove the health, education, and well-being of chil-
programs supported through MCHB discretionary
                                                                 dren, adolescents, families, and communities.
grant programs. States, organizations, programs, and
                                                                    After the publication of the Bright Futures guide-
individuals who receive MCHB funds are mandated
                                                                 lines, the implementation phase of Building Bright
to have the ability to:
                                                                 Futures was initiated to 1) foster partnerships be-
                                                                 tween families and professionals; 2) establish links
• Value diversity and similarities among all people              among health professionals and between profession-
• Understand and effectively respond to cultural                 als and communities; 3) enhance health professional
  differences                                                    practices; and 4) increase family knowledge, skills,
• Engage in cultural self-assessment at the individ-             and participation in health education and prevention
  ual and organizational levels                                  activities. Bright Futures implementation tools in-
• Make adaptations to the delivery of services and               clude Bright Futures in Practice: Oral Health, Bright
  enabling supports                                              Futures in Practice: Nutrition, Bright Futures Pocket
• Institutionalize cultural knowledge                            Guide, Bright Futures Encounter Forms for Health Pro-
                                                                 fessionals, Bright Futures Encounter Forms for Families,
Improving Cultural Competence in Reducing SIDS                   and Bright Futures for Families material: Bright Fu-
  The Back to Sleep campaign has shown dramatic                  tures in Practice: Mental Health and Bright Futures in
success by reducing the incidence of SIDS by 42.3%               Practice: Physical Activity.
since the campaign’s start in 1992. However, wide
variation exists among some racial and ethnic                    Child Care
groups— black and Native American infants are 2.4                  The development of child health policy addressing
and 2.8 times more likely than white infants to die              the health and safety of young children in child care
from SIDS. The MCHB has several initiatives to ad-               settings has been a priority of the MCHB and its
dress racial disparities in SIDS.                                partners. Caring for Our Children: National Health and

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Safety Performance Standards: Guidelines for Out-of-              to the emergency care of children. Fewer than half of
Home Child Care Programs and the Healthy Child                    all hospitals (46%) with emergency departments
Care America (HCCA) program are the result of                     have the necessary equipment for the stabilization of
national collaborations to generate and disseminate               children who are ill or injured. Only 5 states cur-
new knowledge related to child care. In addition to               rently require that advanced life support ambulances
health professionals, states are encouraged to use                carry all EMSC-recommended equipment needed to
these publications as guidance in their development               stabilize a child. Only 24% of hospitals in the United
of standards and licensing regulations.                           States have mental health services for children and
   Although health professionals within public                    adolescents.
health departments are readily identified as appro-
priate resources to control the spread of infectious              Medical Home
diseases, they are not as readily seen as potential
                                                                     The Medical Home Initiative is an endeavor to
partners to promote the health and safety of children
                                                                  ensure equity in access to care for children with
in child care settings. The same situation holds true
                                                                  special health care needs. Children with special
for private-sector health providers. Although pedia-
                                                                  needs are those who have a chronic physical, devel-
tricians and family practitioners are accepted as vital
                                                                  opmental, behavioral, and/or emotional condition. It
community resources to provide a medical home for
                                                                  is an approach to pediatric health care in which a
every child, the need to build partnerships that in-
                                                                  well-trained and trusted physician partners with the
crease their availability and accessibility as health
                                                                  family to establish regular ongoing health care. Al-
consultants to child care programs in their commu-
                                                                  though this care is available to most families of typ-
nities often is unrecognized.
                                                                  ically developing children, it has not been routinely
   In response to the need to create healthy and safe
                                                                  available to many children with special health care
environments for children in child care settings, the
                                                                  needs, particularly those with complex medical con-
HCCA program, a federal initiative to foster collab-
                                                                  ditions.2 As many as 12.6 million children, represent-
oration between health and child care providers, was              ing 18% of the total child population, have a chronic
established on the principle that families, child care            physical, developmental, behavioral, and/or emo-
providers, and health care professionals in partner-              tional condition that requires health and related ser-
ship can promote the healthy development of young                 vices beyond that required by children generally.3 If
children in child care, increase access to preventive             children at risk are included, as many as one third of
health services, and ensure a safe physical environ-              the total child population may be impacted.
ment for children. Linking health care professionals,                The MCHB implemented the national Medical
child care providers, and families maximizes re-                  Home Initiative in 1994 in collaboration with the
sources for developing comprehensive and coordi-                  AAP. As part of this initiative, a medical home for
nated services for children in child care.                        every child with special health care needs was estab-
   The partnership assisted in developing the HCCA                lished as 1 of 6 critical outcomes for a comprehensive
Blueprint for Action. The blueprint provides commu-               system of care. The initiative has several purposes,
nities with steps that they can take to expand existing           including:
public and private services and resources or to create
new services that link families, health, and child care.          • To establish partnerships with families in the plan-
The AAP administers the HCCA program, which                         ning, development, and oversight of the medical
continues to serve as a successful model for creating               home
partnerships between health and child care provid-                • To develop national models for providing medical
ers.                                                                homes to children with special health care needs
                                                                  • To develop effective support systems for primary
Emergency Medical Services for Children
                                                                    care physicians who serve these children
   The EMSC program was initiated to improve the                  • To develop improved strategies for integrating
capacity of existing emergency medical services sys-                health and medical services
tems to treat serious childhood illness and trauma.               • To improve families’ access to medical homes
The 3 areas of focus—properly trained personnel,
equipped ambulances and emergency departments,                      The Medical Home Initiative has been a catalyst to
and organized response systems—are meant to en-                   ensure inclusion of all children with special health
sure equity in the emergency care received by chil-               care needs in the health care system. It has:
dren.
   Since its establishment in 1984, the EMSC effort               • Provided the framework to provide comprehen-
has improved the availability of child-oriented                     sive systems of continuity of care that are geo-
equipment in ambulances and emergency depart-                       graphically and financially accessible to all fami-
ments. It has initiated hundreds of programs to pre-                lies
vent injuries and has provided thousands of hours of              • Articulated a strategy to 1) identify the special
training to emergency medical care providers. EMSC                  needs of children, 2) establish collaboration among
efforts have led to legislation mandating programs in               primary care and subspecialty physicians to meet
13 states and to educational materials covering every               those needs, 3) refer families to the right specialists
aspect of pediatric emergency care. However, al-                    at the time, and 4) form effective working relation-
though EMSC has made great progress over the                        ships between primary care and subspecialty phy-
years, inequities and disparities remain with respect               sicians to coordinate and help families sort

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                                                                                                       SUPPLEMENT      729
through and interpret the recommendations of                   children. Pediatricians must redefine the dynamic of
  specialists                                                    their relationships with families who 1) have an im-
• Established a mechanism to provide early referrals             portant role to play in educating health care profes-
  for families to a broad array of community ser-                sionals about the changes in attitudes, behaviors,
  vices and to ensure that primary care physicians               practices, and procedures that are needed to truly
  participate in the development of Individual Edu-              implement medical homes; 2) are most effective in
  cation Program and Individualized Family Service               advocating for the needs of their children; and 3) are
  Plans                                                          key to promoting medical homes at the practice,
• Ensured inclusion by addressing the health and                 policy, and political levels.
  medical needs of the child to allow children to live
  at home, attend their neighborhood school, and                                           CONCLUSIONS
  participate in all community activities like their               The challenge of responding to the social, political,
  peers                                                          and environmental determinants impacting health
                                                                 disparities in the United States has required new and
   The Functional Outcomes Study reported that care              evolving strategies and partnerships on the part of
that is coordinated, comprehensive, accessible, and              the MCHB. The history of US maternal and child
family centered is associated with improved out-                 health policy has established a platform on which to
comes in health, behavior, and cognitive develop-                build these new approaches to the challenges facing
ment.4 Especially for children who are poor, it has              children and families. Partnerships among families,
been demonstrated that long-term personal relation-              providers, and communities will play an increas-
ships with primary care physicians who coordinate                ingly important role in our response to these social
their care provide important benefits.5 Implementa-              determinants of health. The AAP and the Royal Col-
tion of a medical home can lead to a decrease in rates           lege of Pediatrics and Child Health should use the
of hospitalization, as well as lengths of stay. How-             historical and current experiences of the MCHB as a
ever, there is a cost to equity. David Hirsch, MD, has           platform for research as to the effectiveness of pro-
estimated the cost of providing a comprehensive                  grams to meet the needs of marginalized children
medical home to a child with special health care                 and deal with health disparities in our respective
needs to be $81 per month, as compared with $16                  countries and a template for future programs.
per month for a typically developing child (David
Hirsch, MD, personal communication, December 2000).                                          REFERENCES
   The Medical Home Initiative also has begun to                  1. Hutchins VL. Maternal and Child Health at the Millenium. Monograph.
document the expanded interdisciplinary knowledge                    Maternal and Child Health Bureau: Rockville, MD; 2001
                                                                  2. McPherson M, Arango P, Fox H, et al. A new definition of children with
and skills required by primary care pediatricians to                 special health care needs. Pediatrics. 1998;102:137–140
respond to the challenges facing children with spe-               3. Newacheck PW, Strickland B, Shonkoff JP, et al. An epidemiologic
cial needs. This knowledge and these skills go well                  profile of children with special health care needs. Pediatrics. 1998;102:
beyond the traditional perimeter of pediatric practice               117–123
and require pediatricians to be willing to explore all            4. Sandler AD, Casar S. The Functional Outcomes Study. Asheville, NC: The
                                                                     Olson Huff Center for Child Department, Thomas Rehabilitation
health care options with families and wise and hum-                  Hospital; 1999. In press
ble enough to acknowledge and nurture the exper-                  5. Starfield B. Evaluating the State Children’s Health Insurance Program:
tise and involvement of parents in caring for their                  critical considerations. Annu Rev Public Health. 2000;21:569 –585

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A History of Child Health Equity Legislation in the United States
                               Peter C. van Dyck
                            Pediatrics 2003;112;727

Updated Information &          including high resolution figures, can be found at:
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A History of Child Health Equity Legislation in the United States
                               Peter C. van Dyck
                            Pediatrics 2003;112;727

The online version of this article, along with updated information and services, is
                       located on the World Wide Web at:
      http://pediatrics.aappublications.org/content/112/Supplement_3/727

Pediatrics is the official journal of the American Academy of Pediatrics. A monthly publication, it
has been published continuously since 1948. Pediatrics is owned, published, and trademarked by
the American Academy of Pediatrics, 345 Park Avenue, Itasca, Illinois, 60143. Copyright © 2003
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