The Issue. The mission of the Maternal and Child Health Bureau (MCHB) is comprehensive in scope and establishes the capacity, structure, and function for the MCHB to continually improve the health and well-being of pregnant women and children. The MCHB works in partnership with states and has broad authority to improve access to care and ensure the provision of quality preventive and primary care services. Specific provisions of legislation establish the framework for accomplishing this mission. With the increasing recognition of the social, economic, and environmental determinants of child health and the inequities that exist in access and quality of care for children, the Maternal and Child Health Bureau (MCHB) has set the following 3 goals for year 2003: 1) To eliminate disparities in health status outcomes through the removal of economic, social, and cultural barriers to receiving comprehensive, timely, and appropriate health care; 2) To ensure the highest quality of care through the development of practice guidance and data monitoring and evaluation tools; the use of evidence-based research; and the availability of a well-trained, culturally diverse workforce; and 3) To facilitate access to care through the development and improvement of the maternal and child health infrastructure and systems of care to enhance the provision of necessary, coordinated, quality health care. Priority MCHB strategies to accomplish these goals include improving and expanding 1) the cultural competence of providers (in particular to decrease sudden infant death syndrome [SIDS] among minorities), 2) emergency medical services for children, 3) health and safety in child care, 4) quality of primary pediatric care, and 5) the providing of every child with a medical home.
HISTORY OF CHILD HEALTH POLICY
Health policy in the United States is characterized by incremental change leading to periodic paradigm shifts in the focus and direction of public- and private-sector activities. Elimination of health disparities, as presented in the first of the 3 current Maternal and Child Health Bureau (MCHB) goals, is an example of such a shift. Understanding the evolution of child health legislation in the United States provides perspective as to the genesis of current MCHB goals and insight into future goals and objectives of the MCHB.
During the 19th century, states and private agencies assumed responsibility for the health and social well-being of special groups of children. However, the concept of a partnership between the states and the federal government to improve the health of mothers and children did not appear until 1912, when the federal government established the Children’s Bureau to promote the welfare of children with special needs.
In 1921, the Maternity and Infancy (Sheppard-Towner) Act (PL 67-97) was passed and administered by the Children’s Bureau (1921–1929). Sheppard-Towner was the first federal grant-in-aid program to states for health, establishing the principle of public responsibility for child health. The act was controversial and was labeled as radical and socialistic by its critics. The American Medical Association, Catholic Church, and Public Health Service were instrumental in having it repealed 8 years after enactment. Because of a disagreement within the American Medical Association over its opposition to this legislation, the American Academy of Pediatrics (AAP) was formed in 1930.1
It took the Great Depression to demonstrate how dependent children are on protection against economic hazards and to produce the rich harvest of children’s programs that came with the Social Security Act in 1935 (Vince Hutchins, MD) and other legislation thereafter. Several key legislative actions highlight the subsequent evolution of maternal and child health programs in the United States.
The 1930s: Title V of the Social Security Act authorized grants-in-aid to states for maternal and child health programs (Title V, Part 1), including services for children who are crippled (Title V, Part 2) and child welfare services (Title V, Part 3). The Crippled Children’s Services program was the first US program of medical care. It was based on the principle of continuing federal grants-in-aid to the states.
The 1940s: The Emergency Maternity Infant Care program established a service delivery system to provide free and complete maternity and infant health care for the wives and infants of the 4 lowest grades of servicemen.
The 1980s: The Maternal and Child Health Services Block Grant (1981) consolidated 7 categorical child health programs into a single program of formula grants to states supported by a federal special projects authority. In addition, states adopted injury prevention as a public health issue—the Emergency Medical Services for Children (EMSC) program.
The 1990s: The 1990s ushered in an era focused on assessing unmet service needs, improving accountability in program performance, and strengthening federal-state partnerships, eg, the Healthy Start program (1991) and the Child Health Improvement Act (1997). These programs targeted long-standing national concerns about infant mortality and children who are uninsured
Current programs of the MCHB respond to the contemporary understanding of the priority issues confronting children and families and the social determinants of the well-being of children. The programs acknowledge and respond to the disparities and inequities confronting children’s health.
Improving cultural competence has become a major priority of the MCHB and is considered a prerequisite to achieving equity in health systems. There is a compelling need to consider cultural competence to:
Respond to current and projected demographic changes in the United States
Eliminate long-standing disparities in the health status of people with diverse racial, ethnic, and cultural backgrounds
Improve the quality of services and health outcomes
States are required, through their block grant performance measures, to report on their progress toward achieving cultural competence in their programs. Similar measures are being instituted for programs supported through MCHB discretionary grant programs. States, organizations, programs, and individuals who receive MCHB funds are mandated to have the ability to:
Value diversity and similarities among all people
Understand and effectively respond to cultural differences
Engage in cultural self-assessment at the individual and organizational levels
Make adaptations to the delivery of services and enabling supports
Institutionalize cultural knowledge
Improving Cultural Competence in Reducing SIDS
The Back to Sleep campaign has shown dramatic success by reducing the incidence of SIDS by 42.3% since the campaign’s start in 1992. However, wide variation exists among some racial and ethnic groups—black and Native American infants are 2.4 and 2.8 times more likely than white infants to die from SIDS. The MCHB has several initiatives to address racial disparities in SIDS.
The MCHB has supported the development of newborn metabolic screening and newborn hearing screening. However, the array of screening tests performed by each state varies and changes periodically. These inconsistencies reflect differences in community values, state political and economic environments, and public health technical capabilities. In response to these inequities, the MCHB has funded a number of initiatives, including the following:
The National Newborn Screening and Genetic Resource Center to provide technical assistance to the states
The development of standards for conditions to be screened, national guidelines for informed consent, and retention of residual blood spots and their storage
States to facilitate the integration of newborn screening programs and data systems with other points of early identification of children with genetic conditions and other special health needs
Public health agencies and the private sector to ensure coordination of screening efforts
The Consumer Network for Genetic Resource and Service Information to develop culturally appropriate communication strategies
Research and demonstration programs on implementing newborn hearing screening technologies
Bright Futures Guidelines
Bright Futures is a vision, philosophy, set of expert guidelines, and a practical developmental approach to providing health supervision for children of all ages. Bright Futures is dedicated to the principle that every child deserves to be healthy and to have a trusting relationship among health professionals, the child, the family, and the community as partners in health practice. The mission is to promote and improve the health, education, and well-being of children, adolescents, families, and communities.
After the publication of the Bright Futures guidelines, the implementation phase of Building Bright Futures was initiated to 1) foster partnerships between families and professionals; 2) establish links among health professionals and between professionals and communities; 3) enhance health professional practices; and 4) increase family knowledge, skills, and participation in health education and prevention activities. Bright Futures implementation tools include Bright Futures in Practice: Oral Health, Bright Futures in Practice: Nutrition, Bright Futures Pocket Guide, Bright Futures Encounter Forms for Health Professionals, Bright Futures Encounter Forms for Families, and Bright Futures for Families material: Bright Futures in Practice: Mental Health and Bright Futures in Practice: Physical Activity.
The development of child health policy addressing the health and safety of young children in child care settings has been a priority of the MCHB and its partners. Caring for Our Children: National Health and Safety Performance Standards: Guidelines for Out-of-Home Child Care Programs and the Healthy Child Care America (HCCA) program are the result of national collaborations to generate and disseminate new knowledge related to child care. In addition to health professionals, states are encouraged to use these publications as guidance in their development of standards and licensing regulations.
Although health professionals within public health departments are readily identified as appropriate resources to control the spread of infectious diseases, they are not as readily seen as potential partners to promote the health and safety of children in child care settings. The same situation holds true for private-sector health providers. Although pediatricians and family practitioners are accepted as vital community resources to provide a medical home for every child, the need to build partnerships that increase their availability and accessibility as health consultants to child care programs in their communities often is unrecognized.
In response to the need to create healthy and safe environments for children in child care settings, the HCCA program, a federal initiative to foster collaboration between health and child care providers, was established on the principle that families, child care providers, and health care professionals in partnership can promote the healthy development of young children in child care, increase access to preventive health services, and ensure a safe physical environment for children. Linking health care professionals, child care providers, and families maximizes resources for developing comprehensive and coordinated services for children in child care.
The partnership assisted in developing the HCCA Blueprint for Action. The blueprint provides communities with steps that they can take to expand existing public and private services and resources or to create new services that link families, health, and child care. The AAP administers the HCCA program, which continues to serve as a successful model for creating partnerships between health and child care providers.
Emergency Medical Services for Children
The EMSC program was initiated to improve the capacity of existing emergency medical services systems to treat serious childhood illness and trauma. The 3 areas of focus—properly trained personnel, equipped ambulances and emergency departments, and organized response systems—are meant to ensure equity in the emergency care received by children.
Since its establishment in 1984, the EMSC effort has improved the availability of child-oriented equipment in ambulances and emergency departments. It has initiated hundreds of programs to prevent injuries and has provided thousands of hours of training to emergency medical care providers. EMSC efforts have led to legislation mandating programs in 13 states and to educational materials covering every aspect of pediatric emergency care. However, although EMSC has made great progress over the years, inequities and disparities remain with respect to the emergency care of children. Fewer than half of all hospitals (46%) with emergency departments have the necessary equipment for the stabilization of children who are ill or injured. Only 5 states currently require that advanced life support ambulances carry all EMSC-recommended equipment needed to stabilize a child. Only 24% of hospitals in the United States have mental health services for children and adolescents.
The Medical Home Initiative is an endeavor to ensure equity in access to care for children with special health care needs. Children with special needs are those who have a chronic physical, developmental, behavioral, and/or emotional condition. It is an approach to pediatric health care in which a well-trained and trusted physician partners with the family to establish regular ongoing health care. Although this care is available to most families of typically developing children, it has not been routinely available to many children with special health care needs, particularly those with complex medical conditions.2 As many as 12.6 million children, representing 18% of the total child population, have a chronic physical, developmental, behavioral, and/or emotional condition that requires health and related services beyond that required by children generally.3 If children at risk are included, as many as one third of the total child population may be impacted.
The MCHB implemented the national Medical Home Initiative in 1994 in collaboration with the AAP. As part of this initiative, a medical home for every child with special health care needs was established as 1 of 6 critical outcomes for a comprehensive system of care. The initiative has several purposes, including:
To establish partnerships with families in the planning, development, and oversight of the medical home
To develop national models for providing medical homes to children with special health care needs
To develop effective support systems for primary care physicians who serve these children
To develop improved strategies for integrating health and medical services
To improve families’ access to medical homes
The Medical Home Initiative has been a catalyst to ensure inclusion of all children with special health care needs in the health care system. It has:
Provided the framework to provide comprehensive systems of continuity of care that are geographically and financially accessible to all families
Articulated a strategy to 1) identify the special needs of children, 2) establish collaboration among primary care and subspecialty physicians to meet those needs, 3) refer families to the right specialists at the time, and 4) form effective working relationships between primary care and subspecialty physicians to coordinate and help families sort through and interpret the recommendations of specialists
Established a mechanism to provide early referrals for families to a broad array of community services and to ensure that primary care physicians participate in the development of Individual Education Program and Individualized Family Service Plans
Ensured inclusion by addressing the health and medical needs of the child to allow children to live at home, attend their neighborhood school, and participate in all community activities like their peers
The Functional Outcomes Study reported that care that is coordinated, comprehensive, accessible, and family centered is associated with improved outcomes in health, behavior, and cognitive development.4 Especially for children who are poor, it has been demonstrated that long-term personal relationships with primary care physicians who coordinate their care provide important benefits.5 Implementation of a medical home can lead to a decrease in rates of hospitalization, as well as lengths of stay. However, there is a cost to equity. David Hirsch, MD, has estimated the cost of providing a comprehensive medical home to a child with special health care needs to be $81 per month, as compared with $16 per month for a typically developing child (David Hirsch, MD, personal communication, December 2000).
The Medical Home Initiative also has begun to document the expanded interdisciplinary knowledge and skills required by primary care pediatricians to respond to the challenges facing children with special needs. This knowledge and these skills go well beyond the traditional perimeter of pediatric practice and require pediatricians to be willing to explore all health care options with families and wise and humble enough to acknowledge and nurture the expertise and involvement of parents in caring for their children. Pediatricians must redefine the dynamic of their relationships with families who 1) have an important role to play in educating health care professionals about the changes in attitudes, behaviors, practices, and procedures that are needed to truly implement medical homes; 2) are most effective in advocating for the needs of their children; and 3) are key to promoting medical homes at the practice, policy, and political levels.
The challenge of responding to the social, political, and environmental determinants impacting health disparities in the United States has required new and evolving strategies and partnerships on the part of the MCHB. The history of US maternal and child health policy has established a platform on which to build these new approaches to the challenges facing children and families. Partnerships among families, providers, and communities will play an increasingly important role in our response to these social determinants of health. The AAP and the Royal College of Pediatrics and Child Health should use the historical and current experiences of the MCHB as a platform for research as to the effectiveness of programs to meet the needs of marginalized children and deal with health disparities in our respective countries and a template for future programs.
- ↵Hutchins VL. Maternal and Child Health at the Millenium. Monograph. Maternal and Child Health Bureau: Rockville, MD; 2001
- ↵McPherson M, Arango P, Fox H, et al. A new definition of children with special health care needs. Pediatrics.1998;102 :137– 140
- ↵Newacheck PW, Strickland B, Shonkoff JP, et al. An epidemiologic profile of children with special health care needs. Pediatrics.1998;102 :117– 123
- ↵Sandler AD, Casar S. The Functional Outcomes Study. Asheville, NC: The Olson Huff Center for Child Department, Thomas Rehabilitation Hospital; 1999. In press
- Copyright © 2003 by the American Academy of Pediatrics