Maternal And Child Health Bureau Research Articles

Over a Century of Leadership for Maternal and Child Health in the United States: An Updated History of the Maternal and Child Health Bureau.

The Maternal and Child Health Bureau (MCHB) is the only federal agency solely focused on improving the health and well-being of all of America's mothers, children, and families. Founded in 1912 as the Children's Bureau, the Bureau has evolved over 110 years in response to the changing needs of MCH populations and shifting legislative and administrative priorities. The Bureau's role in promoting and protecting maternal and child health has grown, spurred by landmark legislation including the Sheppard-Towner Maternity and Infancy Care Act, Title V of the Social Security Act, and multiple programmatic authorizations. Emerging issues in the field-ranging from deficiencies in access and coverage for health care to the emergence of new infectious diseases-have resulted in additional roles and responsibilities for the Bureau; these include convening state and national partners, providing leadership on priority topics, developing guidelines for care, and implementing new programs. Throughout its history, the Bureau has partnered with other federal government agencies, states, communities, and families to improve outcomes for mothers, children, and families. Previous reports have documented the founding of the Children's Bureau and the growth of federal legislation and programs through 1990. This updated history builds on those works and describes the multiple new programs and legislative authorities assigned to the Bureau since the Title V reforms of the 1980s, the Bureau's response to emerging issues, and the contemporary structure and function of MCHB.

Progress, Persistence, and Hope: Building a System of Services for CYSHCN and Their Families.

Children and youth with special health care needs (CYSHCN) have long been a priority population for the federal Maternal and Child Health Bureau (MCHB). For more than a century, MCHB and its organizational predecessors have funded programmatic efforts to develop a community-based system of services to improve access and quality care for meeting the needs of children and families. MCHB’s work has evolved to address system innovations and advances in clinical care while adapting to the changing legislative landscape. Despite improvement in some health-related outcomes, important gaps remain for ensuring the health and well-being of CYSHCN and their families. In particular, the stark racial inequities and longstanding challenges made more visible by the coronavirus disease 2019 (COVID-19) pandemic necessitate renewed efforts by federal, state, and local governments, payers, and child- and family-serving organizations. Building on decades of experience and leadership, MCHB is releasing the Blueprint for Change: Guiding Principles for a System of Services that Meet the Needs of CYSHCN and Their Families (Blueprint for Change). This article presents the historical leadership of MCHB in advancing a system of services for CYSHCN and introduces the Blueprint for Change, which focuses on 4 critical areas to ensure that CYSHCN thrive: health equity, family and child well-being and quality of life, access to services and supports, and financing of services.The story of CYSHCN in the United States has been one of progress, persistence, and hopes still to be fulfilled. The MCHB, part of the Health Resources and Services Administration, defines this population as “those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.”1 More than 14.1 million children in the United States meet this definition, comprising 19.4% of the population.2 Compared to other children and youth, CYSHCN are more likely to live in poverty, live in families receiving public assistance, and be exposed to adverse childhood experiences (with more than one-third of families reporting divorce of a parent or guardian or having difficulty in covering basic expenses).3The broad definition of CYSHCN results in a heterogeneous population with varying health statuses and needs. Diagnoses among CYSHCN range from allergies, asthma, and mental or behavioral health disorders to much less common, and even rare, conditions.2 Recent focus has been placed on a specific subpopulation of CYSHCN: “children with medical complexity” (CMC). CMC are described as children with “substantial family-identified health care service needs,” the presence of “1 or more chronic clinical conditions…that are severe and/or associated with medical fragility,” severe functional limitations that may require assistive technology, and “high projected utilization of health resources.”4 Estimates suggest the proportion of CMC ranges from 0.4% to 1.6% (320 000–1 200 000) of all children in the United States.5,6 CMC represent approximately 6% of children on Medicaid or the Children’s Health Insurance Program but account for almost 40% of pediatric health care costs.7 CYSHCN and their families often require services from various sectors across the life course, from health to education and beyond.Although significant progress has been made in advancing the clinical care and system transformations necessary to improve outcomes for CYSHCN, much work still needs to be done to ensure that children and their families thrive in their communities. This article highlights MCHB’s historic leadership role in transforming the system that serves CYSHCN and their families, our current and ongoing progress, and how a new framework, Blueprint for Change: Guiding Principles for a System of Services that Meet the Needs of CYSHCN and Their Families (Blueprint for Change), can advance the field.From its earliest days, the job of the Children’s Bureau (the Bureau), created in 1912 and the predecessor of the present MCHB, was to “investigate and report…upon all matters pertaining to the welfare of children and child life among all classes of our people.”8 That early work included a survey of “provisions for crippled children” in 14 states, which influenced the Bureau’s recommendations to President Theodore Roosevelt’s Committee on Economic Security regarding the development of a program for such children in what would become the Social Security Act.9The 1930 White House Conference on Child Health and Protection outlined a series of 5 rights for “the handicapped child” and endorsed a series of rights for all children in its report, the Children’s Charter. These rights included: “for every child health protection from birth through adolescence, including: periodical examinations and, where needed, care of specialists and hospital treatment”; “for every child who is blind, deaf, crippled, or otherwise physically handicapped, and for the child who is mentally handicapped, such measures as will early discover and diagnose his handicap, provide care and treatment, and so train him that he may become an asset to society rather than a liability”; and “for every child the right to grow up in a family with an adequate standard of living and the security of a stable income as the surest safeguard against social handicaps.”The 1930 conference findings influenced the CYSHCN provisions (including the authorization of grants-in-aid to states) in Title V of the Social Security Act (Title V), enacted in 1935.10,11 Title V authorized appropriations to states for, among other purposes: “enabling each State to extend and improve (especially in rural areas and in areas suffering from severe economic distress), as far as practicable under the conditions in such State, services for locating crippled children and for providing medical, surgical, corrective, and other services and care, and facilities for diagnosis, hospitalization, and aftercare, for children who are crippled or who are suffering from conditions which lead to crippling.”12In the ensuing years, Bureau investments supported efforts to improve access to and quality of care for children with acute and chronic health conditions. In the 1960s, interest by the Kennedy administration and Congress resulted in amendments to Title V and additional funding for “mentally retarded” children.13 Later, the “Children and Youth” projects increased the availability of clinical resources (facilities, providers, support services, and so on) to accompany payment for medical services offered under the newly created Medicaid program.10,14In 1981, Title V was converted into the Maternal and Child Health Services Block Grant (block grant). The special emphasis on CYSHCN persisted, but in 1985, language in the Omnibus Budget Reconciliation Act (OBRA) changed the terminology from “crippled children” to “children with special health care needs.”15 OBRA 1989 amended the Social Security Act and mandated that state Title V programs spend at least 30% of their federal block grant funds on services for CYSHCN and to “facilitate the development of community-based systems of services for such children and their families.”17 Historically, states used their block grant funds to provide direct services to CYSHCN. This legislative change allowed states to implement efforts to improve the system of services for CYSHCN. In recent years, states have shifted from providing direct, clinical services (to relatively small numbers of CYSHCN) to population health approaches, maximizing the reach and impact of block grant funds to address the health and well-being of all CYSHCN in a state. These approaches work at the policy level or across multiple service sectors and may address social or environmental factors that impact health equity.18A hallmark of the Bureau’s work through the block grant and its other investments for CYSHCN is partnering with families, health professionals, and state MCH leadership to transform and advance a system of services for CYSHCN. The flexibility provided by the block grant allows states to tailor their approaches to meet state- and community-specific needs. This strategy yields substantial variability in services offered to CYSHCN and their families, and system development across states and jurisdictions.19 MCHB’s efforts to ensure a robust and impactful system of services for CYSHCN have extended, and must continue to extend, beyond efforts financed by the block grant to leverage other national leadership opportunities and partnerships with government and private sector entities. These partnerships will remain essential to optimally serve CYSHCN and achieve the principles set forth in the Blueprint for Change.Bureau programs for children and families have evolved along with advanced understanding of disease detection, treatment, prevention, and family needs. For example, as the science of newborn screening evolved in the latter half of the 20th century, the Bureau established programs to expand state-based screening programs and access to specialty genetic services. Hearing screening technology developed in the late 1980s and early 1990s allowed for the development of state systems for universal early hearing detection and intervention.20 During initial discussions around health reform in the 1990s, the Bureau facilitated conversations on financing of care for CYSHCN, care coordination, and family-centered care. The increasing incidence of autism and tools to support early diagnosis led to legislation authorizing the Bureau to create programs that expand access and training of professionals to diagnose and treat autism spectrum disorder.The 1982 Surgeon General’s workshop “Children with Handicaps and Their Families” and the subsequent Surgeon General’s report on children with special health care needs influenced the development of family-centered care approaches and a community-based system of care.21 After the Surgeon General’s report and passage of OBRA 1989, MCHB and its partners developed and disseminated a definition of CYSHCN. To implement and monitor progress toward achieving the system of services for CYSHCN required by OBRA 1989, MCHB and its partners subsequently established the 6 core indicators of a well-functioning system of services.22 These 6 indicators (Fig 1) would serve as the sentinel measures for CYSHCN programming for the next 2 decades. In 2001, MCHB worked with the Centers for Disease Control and Prevention to field the National Survey of Children with Special Health Care Needs, which provided national- and state-level estimates of CYSHCN for the first time, as well as performance on the 6 core indicators.2 In 2002 and 2011, MCHB partnered with families and other stakeholders to develop comprehensive 10 year strategic plans to implement the 6 core indicators and coordinate a system of services for CYSHCN. It was incumbent on MCHB to translate how these changes could influence and effect the MCH public health workforce and the populations they serve.The Bureau’s work over the past century has also evolved in the context of a changing legislative landscape related to the protection and coverage of people with disabilities, including CYSHCN. As an example, the Tax Equity and Fiscal Responsibility Act of 1982 included the “Katie Beckett Provision,” which made it easier for families of CYSHCN to qualify for Medicaid coverage of home-based care.23 Additionally, the Family Opportunity Act of 2005 established Family-to-Family Health Information Centers, now located in every state, the District of Columbia, 5 territories, and 3 tribal organizations. These family-run centers provide information, training, technical assistance, and peer support to families of CYSHCN to help them make informed decisions about their children’s health and participate in system-building activities within their communities and states.16 The Patient Protection and Affordable Care Act (ACA) of 2010 codified important health insurance coverage provisions and protections for CYSHCN, including the prohibition of “preexisting conditions,” removal of lifetime benefit caps, expansion of Medicaid coverage and allowing children to remain covered under their parents’ insurance until age 26, and prohibition of cost-sharing for preventive services.24 After passage of the ACA, MCHB invested in a number of programs to support families, providers, and states in understanding and implementing the act. Although the ACA had a positive impact on many families with CYSHCN, the act was not a panacea and did not fully address adequate coverage or underinsurance.25 MCHB continues to fund research and other investments to identify, measure, and fill the gaps and reduce financial hardships and burden for families.Today, in addition to the Block Grant, MCHB funds a variety of programs aimed at improving outcomes for CYSHCN and families. Current efforts include identifying emerging issues, measuring CYSHCN needs and outcomes, optimizing service delivery, supporting public health infrastructure, providing technical assistance, supporting family leadership, and engaging in policy development or assurance. After decades of working to build the system of services, the Bureau has learned, through both successes and challenges, a number of key lessons: (1) we must engage families meaningfully through all steps of the process; (2) to strengthen the system of services for CYSHCN, we must be able to define and measure the population and components of the system; (3) we must continually assess and evaluate the Bureau’s research and programmatic resources to address ongoing and emerging issues that impact CYSHCN and the services they receive; (4) we must always approach this work through a lens of equity; and (5) MCHB has a unique and enduring role as the only federal agency with a statutory responsibility to support systems of care for CYSHCN.Although efforts to improve care and functional health outcomes over the years have benefitted CYSHCN and their families, much work remains. Families of CYSHCN have reported favorably on some of the 6 core outcomes for CYSHCN, including easy-to-access services and shared decision-making. However, less than one-half of families with CYSHCN report receiving care that meets medical home criteria.2 Similarly, only 1 in 5 families report receiving needed supports for a successful health care transition to adulthood, and only 1 in 6 CYSHCN are served in well-functioning system of care.2 Further, the lack of integrated care contributes to families of CYSHCN having to provide care coordination and informal family caregiving. Households that forego employment due to caregiving for CYSHCN lose as much as $18 000 in earnings per year, and nationally, family caregivers provide approximately 1.5 billion hours of care to CYSHCN annually.26,27Among CYSHCN, disparities exist by race and language status in measures of care quality, such as medical home, access to easy-to-use services, and family partnership in decision-making.28–30 Black and Hispanic children also experience higher rates of certain diagnoses (eg, asthma, cerebral palsy, HIV/AIDS, depression, and so on) than do white children; lower rates of other diagnoses (eg, ADHD); and decreased rates of survival for acute leukemia, Down syndrome, Type 1 diabetes, and traumatic brain injury.31 The impact and intersection of racism and discrimination cannot be overlooked in any conversation on child health, particularly for CYSHCN.32 CYSHCN are more susceptible to experiencing racism and discrimination compared to children of similar age, race, and sex who do not have a special health care need.33The COVID-19 pandemic presented numerous challenges for CYSHCN. Children with underlying medical conditions had a higher rate of hospitalization for COVID-19, with Black and Hispanic CYSHCN having the highest rates.34 Three-quarters of all childhood deaths due to COVID-19 were among children with at least 1 underlying medical condition.35 A few months after the start of the pandemic, a survey of parents found that among children with special education needs, 40% reported receiving no support for their child, and few parents reported that their child received all of the services they needed. Additionally, compared to parents of other children, parents of children with special education needs were more likely to report that their child was engaged in “little to no remote learning” and more likely to report concerns about their child’s mental health.36 The COVID-19 pandemic demonstrated the unique considerations needed for CYSHCN, including ensuring continuity of special education services delivered in school or community settings in the face of stay-at-home orders and planning for safe delivery of in-home health services in the setting of a respiratory virus pandemic.37The persistence of suboptimal health outcomes and disparities in access and quality care for CYSHCN, heightened by the COVID-19 pandemic, requires revisiting MCHB’s strategic efforts to provide national leadership to improve the health and well-being of CYSHCN and their families. The Blueprint for Change includes 4 critical areas of focus: health equity, family and child well-being and quality of life, access to services and supports, and financing of services. As described in Blueprint for Change, the principles and strategies were developed after extensive stakeholder engagement. It envisions that “CYSHCN enjoy a full life, from childhood through adulthood, and thrive in a system that supports their social, health, and emotional needs, [and] ensures dignity, autonomy, independence and active participation in their community.”38The Blueprint for Change aligns with MCHB’s recently released strategic plan, which focuses on 4 strategic goals: access, equity, workforce and capacity, and impact.39 Specific objectives within the plan include family and consumer leadership, a system of care, team-based and coordinated approaches to care, health equity, and state or local capacity building. Collectively, the Blueprint for Change and MCHB’s strategic plan can position the field to move forward, overcome persistent challenges, and achieve the vision set forth in both agendas.The release of the Blueprint for Change builds on MCHB’s legacy of providing national guidance and leadership to benefit CYSHCN and their families. It comes at a time of rapid transformation in our health care system, a national reckoning on racism and discrimination, and in the midst of a global pandemic that has exposed and exacerbated the vulnerabilities faced by many families. This confluence of events presents key opportunities for transformative leadership to advance a system serving CYSHCN and their families.MCHB will continue its historic leadership in monitoring, identifying, and assessing needs through the National Survey of Children’s Health and elevating the importance of family and stakeholder partnerships. The Title V MCH block grant can be a mechanism to advance the Blueprint for Change and support state Title V programs in modeling leadership for CYSHCN in a system of services through policy, practice, and measurement. MCHB will continue to support innovations in system- and practice-level research and implementation; promote workforce development and coordinating and integration of data across agencies, organizations, and data sets; and work to remove barriers to equitable health care and services to ensure the optimal health and well-being of all CYSHCN.Ongoing system transformation will require leadership and partnerships across agencies at the federal, state, and local levels, and between families, health care professionals, policy makers, and public health practitioners. MCHB can build on its strong partnerships with key federal agencies such as the Centers for Disease Control and Prevention, Centers for Medicare and Medicaid Services, National Institutes of Health, Department of Education and others to bring attention to and collectively advance the Blueprint for Change. Strong partnerships with state Title V programs, academic centers, provider organizations and families will generate momentum to further accelerate improvements in the health and well-being of CYSHCN.Below are key recommendations that build on the principles in each of the 4 critical areas outlined in the Blueprint for Change: health equity, child/family well-being and quality of life, access to services and supports, and financing of services.The health and well-being of CYSHCN and families has improved over the last century, but great opportunities exist to improve outcomes and focus on eliminating inequities. Longstanding disparities, many exacerbated by the pandemic, underscore the urgency of transforming the system that serves this population. MCHB’s Blueprint for Change provides not only a roadmap for improvement, with a focus on health equity, family and child well-being and quality of life, access to services and supports, and financing of services but also demonstrates our commitment to lead this effort. MCHB will continue to build on its rich history and legacy of shepherding programmatic and legislative changes to improve the health and well-being of CYSHCN and their families.

Life Course Investments at the Maternal and Child Health Bureau.

The Life Course Health Development (LCHD) framework posits that an individual’s health is the result of dynamic and continuous interactions among biological, social, environmental, and behavioral risk and protective factors throughout their lifetime.1 The early years represent a time of particular sensitivity to various genetic and environmental contributing factors2 and David Barker’s pioneering work on the connections between birth weight and health later in life shows that there is a considerable “front-loading” of the way in which events and experiences influence life-long health. The LCHD framework also emphasizes the importance of multiple levels and conditions of the surrounding environment on maternal and child health (MCH), including health care access and quality, along with a range of other factors that, all together, broadly constitute the social determinants of health.3 Consequently, there is a need for broad and diverse approaches to adopting life course interventions in MCH research, with thoughtful consideration of the type, level, and mode of delivery of those interventions, their timing, and the plan to study their efficacy and effectiveness. The current challenge is how to advance life course research through rigorously testing hypotheses with longitudinal data when available, and through innovative approaches to shorter-term studies and analysis of cross-sectional data when it is not. By considering the health and well-being of the whole person in the context of the family and ecosystem, and identifying strategic points and ways to intervene, life course intervention research aims to have a greater collective impact on MCH, and to accelerate the translation of life course theory to practice.The Maternal and Child Health Bureau (MCHB) within the Health Resources and Services Administration of the US Department of Health and Human Services supports health care and public health services for an estimated 60 million people nationwide. Its mission is to give children and families a fair shot at reaching their full potential by creating opportunities that foster optimal health and allow them to live long, healthy lives regardless of their income, education, or racial or ethnic background. Prevention and early intervention are critical to this mission. MCHB has made a long-term investment into the LCHD approach and its application to practice through the administration of programs, support of research, and investment in training of the next generation of researchers from a life course perspective.4 MCHB has a deliberate focus on, and support for, advancing equity within MCH life course research and supports the study of social determinants of health and health equity, which reflect part of the life course framework on the interactions among biological, social, environmental, and behavioral risk and protective factors.MCHB first supported the Life Course Research Network beginning in 2010, which allowed groups across the nation to continue to develop the LCHD Model5 and its application to research, policy, and practice. This led to the publication of several articles,6 the creation of an initial MCH life course research agenda, and the Handbook of LCHD7 which has informed teaching, research development, and healthcare practice both in the United States and abroad. There has been sustained interest in research to better understand life course influences on health and to identify the best ways to translate this knowledge into practice to benefit the health of mothers and children.MCHB has expanded the scope of the investment on life course research to provide funding for the Life Course Intervention Research Network (LCI-RN) beginning in 2018 for a 5-year project period. This support allows the LCI-RN to build an infrastructure for researchers, practitioners, policymakers, and stakeholders to promote the development, translation, implementation, and dissemination of the Life Course Intervention Research Agenda; the latter will serve as a roadmap by identifying short-term and long-term research priorities. The LCI-RN also serves as a mechanism for interacting, sharing information, and engaging in collaborative and innovative projects and multisite life course intervention research studies that advance LCHD research and inform evidence-based practice and policymaking.The LCI-RN consists of a national coordinating center; two research cores that focus on cross cutting themes in life course research: family and community engagement and race, place, class and gender; and 9 research nodes, each of which focuses on a priority topic for children’s health development: adversity, adaptation and resilience; attention deficit hyperactivity disorder; early childhood mental health; family health development; family measurement; schools; juvenile justice; prematurity; and youth participatory engagement. These nodes encompass the ecosystem in which children live, develop, learn, and grow within the context of the broad LCHD framework. Each node creatively designs new types of interventions to improve health over the life course. Most recently, LCI-RN focused attention to the direct physical effects, as well as the acute and long-term threats to the health and well-being of children resulting from society’s response to the coronavirus disease 2019 (COVID-19) pandemic. A greater understanding of the pathways operating across the life course that might make 1 person more vulnerable than another to the effects of a pandemic, such as COVID-19, has consequently emerged as a research priority; thus, the life course framework guides part of the research agenda and practice for COVID-19.MCHB continues to support new and innovative approaches to advance life-course research; facilitate new partnerships and new interventions that apply the life course framework to inform emerging issues; test and iterate the framework in new settings; and provide the highest possible quality of services and equitable interventions for families and children, improving their health, through infancy into adulthood. The LCI-RN is one of a group of MCHB-funded research programs that focuses on the development of MCH from a life course perspective.8 For example: Autism Longitudinal Data Project supports research that improves understanding of early life origins, signs, and indicators of autism spectrum disorder and other developmental disabilities to maximize health outcomes and trajectories of child development over the life course.Autism Transitions Research Project advances the evidence base on the social determinants and risk factors associated with healthy life (physical, social, mental health, and educational or occupational) outcomes among adolescents and young adults with autism spectrum disorder who are transitioning to adulthood.Autism Intervention Research Network on Physical Health has established a research network to enhance the physical health, well-being, and quality of life for autistic individuals, with a focus on underserved and vulnerable populations, and supporting them across the lifespan.Adolescent and Young Adult Health Research Network focuses on the developmental window of ages 10 to 24 years to study the complex interaction of biopsychosocial factors that shape health trajectories of adolescents, which could influence their health in adulthood.Home Visiting Applied Research Collaborative is a research network that conducts innovative home visiting research as part of the Maternal, Infant, and Early Childhood Home Visiting program, one of the largest MCHB investments, to improve prenatal and early life experiences which lay the foundation for health and development across the lifespan.The papers in this supplement are intended to drive and enhance the field of life course intervention research and pose challenging questions that could be best addressed by using a life course framework to advance the MCH field. For example, the LCHD model recognizes the major importance of families as the creators of the intimate ecosystem in which children develop and grow, and the way in which families function and family health develops over time and opportunities to intervene to improve it. Schools are also an important ecosystem that are critical to children’s educational, cognitive, social and health development trajectories. The contribution of families and schools has not been fully appreciated in existing models. More research is needed to explore the impact of families and schools on each child’s growth and development. The promise of Life Course interventions will only be realized through interdisciplinary collaborations that create new types of partnerships which must always include families and communities. MCHB commends each thoughtful researcher and contributor for collaborating on this supplement to share innovative approaches and for serving as thought leaders in the field.

Building the MCH Public Health Workforce of the Future: A Call to Action from the MCHB Strategic Plan

IntroductionIn 2021, the Maternal and Child Health Bureau (MCHB) released a new strategic plan to guide its work over the next 10–15 years. The plan highlights four goals—access, equity, workforce capacity, and impact—that are essential to achieving MCHB’s vision.MethodsWe present 13 recommendations to highlight opportunities for ongoing and new activities aligned with Goal 3 of the plan—“Strengthen Public Health Capacity and Workforce for MCH.”ResultsRecommendations 1–3 highlight the need to support pathways into state and local MCH public health (PH) positions, to offer accessible and high-quality training for the practicing workforce, and to build capacity to address health and social inequities. Recommendations 4–7 discuss the need to build a racially and ethnically diverse workforce, ensure equity and anti-racism are foundational concepts in training, and strengthen engagement of community members and those with lived experience as part of the MCH PH workforce. Recommendations 8–10 outline opportunities to enhance MCH workforce data and measurement frameworks, and support practice-based research. Recommendations 11–12 discuss the importance of academic-practice partnerships and the need to spur innovation. Recommendation 13 highlights the need to define and amplify the unique skillset of the MCH PH workforce.ConclusionsThe release of the MCHB strategic plan comes at a time of critical need to build and sustain a MCH PH workforce to achieve equity for MCH populations. We encourage the field to engage in dialogue around the recommendations presented in this paper, and to offer additional actions to build and support the MCH PH workforce.

Expanding Newborn Screening for Pompe Disease in the United States: The NewSTEPs New Disorders Implementation Project, a Resource for New Disorder Implementation.

Public health programs in the United States screen more than four million babies each year for at least 30 genetic disorders. The Health and Human Services (HHS) Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) recommends the disorders for state newborn screening (NBS) programs to screen. ACHDNC updated the Recommended Uniform Screening Panel (RUSP) to include Pompe disease in March 2015. To support the expansion of screening for Pompe disease, the Association of Public Health Laboratories (APHL) proposed the Newborn Screening Technical assistance and Evaluation Program (NewSTEPs) New Disorders Implementation Project, funded by the HHS’ Health Resources and Services Administration (HRSA) Maternal and Child Health Bureau (MCHB). Through this project, APHL provided financial support to 15 state NBS programs to enable full implementation of screening for Pompe disease. As of April 27, 2020, nine of the 15 programs had fully implemented Pompe disease newborn screening and six programs are currently pursuing implementation. This article will discuss how states advanced to statewide implementation of screening for Pompe disease, the challenges associated with implementing screening for this condition, the lessons learned during the project, and recommendations for implementing screening for Pompe disease.

Editors’ Note and Prologue

* Abbreviations: AIR-P — : Autism Intervention Research Network on Physical Health ASD — : autism spectrum disorder ATN — : Autism Treatment Network ED — : emergency department HRSA — : Health Resources and Services Administration MCHB — : Maternal and Child Health Bureau Children with autism spectrum disorder (ASD) experience significant developmental challenges and complex co-occurring medical and psychiatric conditions,1–3 and they are at risk for considerable unmet health care needs.4–8 As the reported prevalence of ASD continues to rise,9,10 the need for a health care system that is fully equipped to meet the needs of this population is increasingly important. We are pleased to introduce the third supplement to Pediatrics led by the Autism Intervention Research Network on Physical Health (AIR-P) with support from the Maternal and Child Health Bureau (MCHB) of the Health Resources and Services Administration (HRSA) through the Autism Collaboration, Accountability, Research, Education, and Support Act.11 The 2 previous supplements led by the AIR-P were published in 2012 and 2016, and the work presented in this volume represents significant advances in improving the health and well-being of children with ASD through innovations in research and practice. The articles in this supplement describe infrastructure investments, multiinstitutional collaborations, new models of practice, and original research focused on improving care in multiple locations and contexts for children with ASD and their families. The work reflected in this supplement would not have been possible without considerable federal and private foundation funding. This infrastructure support enabled researchers, clinicians, family members, and key stakeholders to engage in dynamic partnerships to share knowledge and improve systems of care. The supplement begins with an overview of the reach of the HRSA-MCHB Autism and Other Developmental Disabilities Program and its alignment with federal priorities for ASD research.11 The AIR-P represents 1 of 5 autism research networks funded by HRSA and MCHB. In 2008, the … Address correspondence to Evdokia Anagnostou, MD, Holland Bloorview Kids Rehabilitation Hospital, 150 Kilgour Road, Toronto, ON M4G1R8, Canada. Email: eanagnostou{at}hollandbloorview.ca

Title V Maternal and Child Health Services Block Grant Priority Needs and Linked Performance Measures: Current Patterns and Trends (2000-2015).

Objective As part of the Title V Maternal and Child Health (MCH) Services Block Grant, administered by the Health Resources and Services Administration's (HRSA's) Maternal and Child Health Bureau (MCHB), states are required to conduct a comprehensive needs assessment identifying MCH priorities every 5years. The most current needs assessment (2015) occurred after a transformation of the program, in which a new performance measurement framework was created. This analysis examined current patterns and trends in state MCH priorities and selected performance measures to identify changing needs and inform technical support. Methods Multiple coders categorized: (1) state priority needs from 2000 to 2015 into focus areas and subcategories for examination of current, diminishing, and emerging needs; and (2) the selection of linked national and state performance measures in 2015 for all 59 states and jurisdictions. Results Between 2000 and 2015, the proportion of states with a need around pre- and inter-conception care increased from 19% to 66%. More states had needs in the breastfeeding subcategory (42%) compared with 20% of states or less in previous years. Fewer states had needs around data capacity than in past years. Emerging needs included supporting families/relationships. The most commonly selected national performance measures (NPMs) were around breastfeeding and well-woman visits. The state performance measures (SPMs) analysis also emphasized assets, with measures around community/context and positive development. Teen births and postpartum depression were areas where multiple states had SPMs. Conclusions for practice Increasing and emerging needs may help to inform technical assistance and future national measures for the Title V program.

NewSTEPs: The Establishment of a National Newborn Screening Technical Assistance Resource Center.

As newborn screening (NBS) programs in the US implement expanded screening panels, utilize emerging technologies and identify areas for improvement, the need to establish and maintain a community engagement based national technical assistance center becomes apparent. The Newborn Screening Technical assistance and Evaluation Program (NewSTEPs)—a program of the Association of Public Health Laboratories (APHL) in partnership with the Colorado School of Public Health (ColoradoSPH), offers expertise in newborn screening program development, member connection, data analysis, and program evaluation. NewSTEPs provides a secure online data repository designed to collect comprehensive data on newborn screening programs in three strata: state profiles (description of each state program including program hours, fees, and disorders screened), quality indicators (metrics of program performance encompassing screening accuracy and timeliness) and NBS public health surveillance case definitions. NewSTEPs was created in 2012 under a cooperative agreement with the United States Department of Health and Human Services (HHS), Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB). Successful activities of NewSTEPs have resulted in the establishment of a technical assistance resource center and the organization of a network of newborn screening experts. In addition, NewSTEPs coordinates efforts with other federally funded programs in order to maximize resources and to ensure a unified approach to data collection and information sharing.

A New Performance Measurement System for Maternal and Child Health in the United States

Objective The Title V Maternal and Child Health (MCH) Block Grant is the linchpin for US MCH services. The first national performance measures (NPMs) for MCH were instituted in 1997. Changing trends in MCH risk factors, outcomes, health services, data sources, and advances in scientific knowledge, in conjunction with budgetary constraints led the Maternal and Child Health Bureau (MCHB) to design a new performance measurement system.MethodsA workgroup was formed to develop a new system. The following guiding principles were used: (1) Afford States more flexibility and reduce the overall reporting burden; (2) Improve accountability to better document Title V’s impact; (3) Develop NPMs that encompass measures in: maternal and women’s health, perinatal health, child health, children with special health care needs, adolescent health, and cross-cutting areas.ResultsA three-tiered performance measurement system was proposed with national outcome measures (NOMs), NPMs and evidence-based/informed strategy measures (ESMs). NOMs are the ultimate goals that MCHB and States are attempting to achieve. NPMs are measures, generally associated with processes or programs, shown to affect NOMs. ESMs are evidence-based or informed measures that each State Title V program develops to affect the NPMs. There are 15 NPMs from which States select eight, with at least one from each population area. MCHB will provide the data for the NOMs and NPMs, when possible.ConclusionsThe new performance measurement system increases the flexibility and reduces the reporting burden for States by allowing them to choose 8 NPMs to target, and increases accountability by having States develop actionable ESMs.SignificanceThe new national performance measure framework for maternal and child health will allow States more flexibility to address their areas of greatest need, reduce their data reporting burden by having the Maternal and Child Health Bureau provide data for the National Outcome and Performance Measures, yet afford States the opportunity to develop measurable strategies to address their selected performance measures.

The Relationship between Interprofessional Leadership Education and Interprofessional Practice: How Intensive Personal Leadership Education Makes a Difference

OBjECTIvEs To study the effects of the University of North Carolina at Chapel Hill (UNC) Interdisciplinary Leadership Development Program (ILDP) on interprofessional attitudes, beliefs, and use of skills. ILDP is a collaboration among five campus-based U.S. Maternal and Child Health Bureau-funded training programs. These programs included Leadership Education in Neurodevelopmental and Related Disabilities (LEND), Nutrition, Pediatric Dentistry, Public Health, and Social Work. METHODs Using a post-test design, participants in the ILDP from the five training programs were contacted to complete a web-based survey. LEND and Public Health graduates who had not participated in the ILDP were recruited for comparison. Using scales and open-ended questions, we asked graduates to rate the influence of ILDP on their attitudes/beliefs about interprofessional practice, to report the frequency of use of interdisciplinary skills, and to describe those influences on the use of skills in some detail. REsULTs The 208 respondents represented 60% of the graduates from 2001 through 2008. Graduates reported that the yearlong Interdisciplinary Leadership Development Program, a supplement to conventional discipline-based training influenced their interprofessional attitudes, beliefs, and the use of interprofessional skills. In particular, a 3-day Leadership Intensive workshop enhanced graduates’ understanding of individual leadership practices and heightened their appreciation of the assets and challenges of others working in groups. COnCLUsIOns With increasing focus on interprofessional health teams, many evaluations of training neither describe nor measure explicitly the elements of training that enable students to develop interprofessional attitudes, beliefs, and skills. In an evaluation that demonstrated these outcomes, we have described the key role of intentional, personal leadership training in producing these outcomes. Interprofessional training programs should be expected to provide logic models for the relationship between training and the desired outcomes. Received: 08/24/2014 Accepted: 02/08/2015 Published: 04/08/2015 © 2015 Margolis et al. This open access article is distributed under a Creative Commons Attribution License, which allows unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. H IP & Interprofessional Leadership Education and Interprofessional Practice EDUCATIONAL STRATEGY 2(3):eP1071 | 2 Introduction To address the increasing complexity of public health and medical care, national and international entities and scholars have encouraged educators to develop programs to enhance the capacity of professionals to collaborate. Each group has suggested that some combination of dedicated interprofessional and interdisciplinary education and intentional practice are critical in creating competent interdisciplinary professionals. For example, To Err is Human calls for organizations to “establish interdisciplinary team training programs for providers” (Kohn, Corrigan, Donaldson, & McKenzie, 2000, p. 14), while Crossing the Quality Chasm advocates that “clinicians and institutions should actively collaborate and communicate to ensure an appropriate exchange of information and coordination of care” (Committee on Quality of Health Care in America, 2001, p. 209). Frenk et al. promote a competency-based approach to educating health professionals in which teamwork or collaboration is a core competency (Frenk et al., 2010), while the Interprofessional Education Collaborative recently underscored the need for a seamless transition from education to collaborative practice (Interprofessonal Educaton Collaborative Expert Panel, 2011). In a recent commentary, Berwick (2014) underscores the fundamental role of collaboration at the level of health systems, beyond clinical care. The first training programs supported by the United States federal Maternal and Child Health Bureau (MCHB) in the late 1940s were motivated by the need to develop professionals who could build services that enable children to benefit from the perspectives of multiple disciplines, such as physicians, nurses, and public health workers (Athey, Kavanaugh, Bagley, & Hutchins, undated). In recent years, the MCHB articulated 12 core leadership competencies (Table 1), six of which seem especially relevant to creating an interprofessional environment: communication, negotiation and conflict resolution, cultural competency, family-centered care, developing others through teaching and mentoring, and interdisciplinary team building (MCH Leadership Competencies Workgroup, June 2009). While the field of Maternal and Child Health (MCH) has produced many graduates who have provided interprofessional leadership, there is a paucity of research on the specific elements of interprofessional training Table 1. Core MCH Leadership Competencies 1. MCH Knowledge Base/Context 2. Self-reflection 3. Ethics & Professionalism 4. Critical Thinking 5. Communication 6. Negotiation & Conflict Resolution 7. Cultural Competency 8. Family-Centered Care 9. Developing Others through Teaching and Mentoring 10. Interdisciplinary Team Building 11. Working with Communities and Systems 12. Policy and Advocacy Source: Maternal and Child Health Leadership Competencies (Version 3.0). http://leadership.mchtraining.net/?page_id=132 that facilitate the development of interprofessional competencies. As reported elsewhere (Margolis et al., 2012) the MCH Leadership Consortium at the University of North Carolina at Chapel Hill has demonstrated that interprofessional training improved graduates’ attitudes and beliefs about the value of interprofessional practice, and increased their frequency of use of interprofessional skills in practice. The items used to elicit attitudes and beliefs and the frequency of skill use are shown in Table 2 (following page). Most importantly, graduates who reported stronger attitudes or beliefs about the value of interprofessional practice and more frequent use of interprofessional skills were statistically more likely to report that they had contributed to improvements in a specific program, organization, or partnership. This article addresses two questions: (1) how do graduates rate the impact of the Interdisciplinary Leadership Development Program (ILDP) on their attitudes/beliefs and use of skills? and (2) what components of the ILDP were influential in developing attitudes/beliefs and skills for interprofessional practice? We have identified themes that have the potential to inform interprofessional leadership training efforts by the MCH Bureau and other entities committed to workforce development.

The evolving role of leadership and change in maternal and child health epidemiology.

Beginning in the 1980s, there was a growing recognition of the need to quantify the work and contributions of state maternal and child health (MCH) departments [1]. In 1987, the Maternal and Child Health Epidemiology Program (MCHEP) was initiated by the Centers for Disease Control and Prevention (CDC) and the Health Resources and Services Administration’s (HRSA) Maternal and Child Health Bureau (MCHB) to provide epidemiologic leadership for State MCH programs [2, 3]. The success of the MCHEP spawned subsequent initiatives to build MCH data capacity including the development of a National Action Agenda, which was led by the Association of Maternal and Child Health Programs (AMCHP) and CityMatch, and included other national organizations such as the Association of Schools of Public Health, the Association of Teachers of Maternal and Child Health, the Council of State and Territorial Epidemiologists (CSTE), and the National Association of County and City Health Officials [4, 5]. The National Action Agenda focused on increased funding in CDC and HRSA for three areas: better training, stronger data and information systems, and more field-based capacity building. These efforts contributed to a plethora of programs in these areas, including the strengthening of masters, doctoral, and post-doctoral MCH epidemiology training opportunities through programs such as: the MCHB MCH Graduate Student Epidemiology Program for master’s level students; the MCHB MCH Epidemiology Doctoral Fellowship Program; and the CDC/MCHB MCH Epidemiology Master’s and Post-Doctoral Fellows Program, directed by CSTE [6, 7]. Programs to strengthen the analytic skills of the present workforce have included: the MCHB/CDC MCH Epidemiology Methods Training Course; the MCHB MCH Navigator, designed to address and support continuous MCH professional and workforce development needs, including epidemiology; the CDC/MCHB pre-conference trainings at the MCH Epidemiology Conference, administered by the Association of Maternal and Child Health Programs, which have featured such trainings as data linkage, geographic information systems, and needs assessment; pre-conference trainings and focused MCH epidemiology tracks at the CityMatCH and Association of Maternal and Child Health Program Conferences, including trainings on synthetic estimates, small area analysis, and communicating data findings; the CDC evaluation practicum developed to provide a framework for evaluating state MCH programs; and the CDC distance-based course in epidemiologic methods [8–13]. Additionally, the MCH Epidemiology Conference was established in the mid-1990’s, and has served as the focal point for the latest developments in the field [14, 15]. In turn, many factors in maternal and child health data collection and analysis have improved. Since the inception of the program, the capacity of State MCH programs to provide and analyze data has greatly increased [16–19]. Data systems unavailable to states before the late 1980’s, such as linked birth-infant death files, the Pregnancy Risk Assessment Monitoring System (PRAMS), the Youth Risk Behavioral Surveillance System, the Title V Information System, the National Survey of Children’s Health (NSCH), the National Survey of Family Growth, and the National Survey of Children with Special Health Care Needs, are now routinely used. Data systems that are state-based have greatly enhanced our understanding of population-based factors, and have influenced state policies in maternal and child health. For example, data from the Pregnancy Risk Assessment Monitoring System has provided information on state smoking policies on maternal smoking and quit rates [20], breast feeding rates as affected by policy on hospital formula bags [21], and state early discharge policies for newborns [22]. Furthermore, advanced computer software has allowed data systems like vital statistics and Medicaid data to be linked to examine such issues as birth outcomes among Medicaid recipients. A major challenge for leadership in maternal and child health epidemiology was how to increase data and analytic capacity at the State level. In that regard, there has been a great deal of success, as measured by CSTE’s periodic surveys on epidemiologic capacity. From 2004 to 2009, MCH State epidemiologists had the second largest increase in staffing and analytic capacity among all the epidemiologic areas examined, after bioterrorism [23]. As a further measure of success, these assessments also indicated that the percent of states reporting full maternal and child health epidemiologic capacity increased during that time period from 43 to 55 %. Maternal and child health outcomes have also changed since the inception of MCH epidemiology programs. The preterm birth rate and low birth weight rate both rose over 20 % between the early 1990’s and 2006, then began a slight decline [24]. The cesarean section rate climbed almost 50 % between 1996 and 2010 [24]. The Back to Sleep Campaign and the introduction of pulmonary surfactants in the early 1990’s led to a decline in the infant mortality rate through 2000. Infant mortality remained stagnant till 2007, when the decline resumed [25, 26]; yet despite recent declines, the US ranks 34th in the world for infant mortality rates in 2011 [27]. The percent of children with special health care needs has increased, and much of that increase has occurred among developmental conditions such as autism spectrum disorders and attention deficit disorders [28]. The percent of children classified as overweight or obese increased dramatically between 1990 and 2010 [29, 30]. The analytic understanding of these changes in maternal and child health would not have occurred without the work of MCH epidemiologists. But, times have changed, and therefore, the challenges for MCH epidemiology have changed too. The passage of the Affordable Care Act (ACA) in 2010 increased the emphasis of the health care system on prevention and health promotion, as well as increasing coverage for those previously uninsured. Budgetary limitations have meant cutbacks at the local, State, and Federal levels, as well as even greater demands for accountability for dollars and demonstration of impact. It is becoming more difficult and costly to obtain needed data. There has been a decline in the response rates for all types of surveys, whether they are in-person surveys, like the National Health Interview Survey, or telephone surveys such as the National Survey of Children’s Health. It is no longer enough to report simple associations only between a risk factor and an outcome. Theories on life course and fetal origins of adult disease have accelerated the need to account for the complexities that shape the health of children. Prenatal and early life experiences have been seen as having increasing importance on the health of adult populations [31–33]. Advances in communication technology have also affected the speed and mechanisms of MCH information: policy makers and the public expect data and information to be provided more rapidly. What are the challenges that leaders in MCH epidemiology will face in the future?

Protecting All Children's Teeth (PACT): Oral Health in Adolescence

OPEN ACCESSApril 2, 2014Protecting All Children's Teeth (PACT): Oral Health in Adolescence Melinda Clark, MD, David Krol Melinda Clark, MD Albany Medical Center Google Scholar More articles by this author , David Krol Robert Wood Johnson Foundation Google Scholar More articles by this author https://doi.org/10.15766/mep_2374-8265.9762 SectionsAbout ToolsDownload Citations ShareFacebookTwitterEmail AbstractContinued focus on oral health during the adolescent period is important. Many childhood risk factors persist and new oral health risk factors may emerge during adolescence. This resource contains a presentation that discusses the opportunities to prepare, educate, and empower adolescents to take control of their oral health as they move toward adulthood. This resource is a part of Protecting All Children's Teeth (PACT), a series created by the American Academy of Pediatrics' Oral Health Initiative to educate medical students, residents, pediatric primary care providers, and others interested in infant, child, and adolescent health about the importance of oral health in overall health. The series provides in-depth coverage of child oral health, oral health guidance, and preventive care to increase comfort in recognizing dental disease and conditions and communicating with dental professionals. This resource has been in use since 2007 by physicians in training at the medical school and residency levels, as well as those in clinical practice. The content has been used by pediatric, family medicine, and emergency medicine physician training programs, as well as by physician assistants, nurse practitioners, nurses, dentists, and dental hygienists in training and in clinical practice. As this presentation on oral injury is part of a complete oral health curriculum, educators and learners are encouraged to view the additional 12 courses. Educational Objectives By the end of this resource, learners will be able to: List common risk factors for dental caries during adolescence.Define periodontitis and gingivitis, and state clinical signs, risk factors, and anticipatory guidance regarding periodontal disease.Discuss the prevalence of tobacco use among U.S. adolescents and oral effects of tobacco.Recall the adverse oral effects of methamphetamines and marijuana.List common signs of oral cancer.Cite the American Academy of Pediatrics and the American Academy of Pediatric Dentistry stand on oral piercings and counsel a patient on the risks associated with oral piercings. Sign up for the latest publications from MedEdPORTAL Add your email below FILES INCLUDEDReferencesRelatedDetails FILES INCLUDED Included in this publication: Instructor's Guide.doc Adolescent Oral Health – Course 13 PACT.ppt To view all publication components, extract (i.e., unzip) them from the downloaded .zip file. Download editor’s noteThis publication may contain technology or a display format that is no longer in use. CitationClark M, Krol D. Protecting All Children's Teeth (PACT): Oral Health in Adolescence. MedEdPORTAL. 2014;10:9762. https://doi.org/10.15766/mep_2374-8265.9762 Related Protecting All Children's Teeth (PACT): Basic Oral Anatomy Protecting All Children's Teeth (PACT): Oral Health Screening Protecting All Children's Teeth (PACT): Caries Protecting All Children's Teeth (PACT): Preventive Care Protecting All Children's Teeth (PACT): Oral Injury Protecting All Children's Teeth (PACT): Oral Pathology Protecting All Children's Teeth (PACT): Fluoride Protecting All Children's Teeth (PACT): Oral Habits Protecting All Children's Teeth (PACT): Special Needs Protecting All Children's Teeth (PACT): Dental Development Protecting All Children's Teeth (PACT): Oral Findings Protecting All Children's Teeth (PACT): Oral Health in Adolescence Protecting All Children's Teeth (PACT): Systemic Diseases Copyright & Permissions© 2014 Clark and Krol. This is an open-access article publication under the terms of the Creative Commons Attribution-No Derivatives license.KeywordsPediatric Oral HealthAdolescent Oral Health Disclosures None to report. Funding/Support The web-design of the PACT program was funded by the AAP Oral health Initiative, with support from the Maternal and Child Health Bureau (MCHB). Loading ...

The national haemophilia program standards, evaluation and oversight systems in the United States of America.

The US National Hemophilia Program (NHP) is a collaborative relationship between the Maternal and Child Health Bureau (MCHB) of the Health Resources and Services Administration (HRSA), the Centers for Disease Control and Prevention (CDC) and the Medical and Scientific Advisory Council (MASAC) of the National Hemophilia Foundation (NHF). This article is written in three parts outlining the roles, collaborative and integrated working relationships of the three core entities (MCHB, CDC, NHF). We will discuss the birth and evolution of the modern day NHP and haemophilia treatment center (HTC) network, the evolution and role of surveillance programs, treatment guideline and standard setting, the impact of health care reform on access to comprehensive care and on-going initiatives to improve health outcomes for those living with haemophilia and related bleeding disorders. Although there is, at present, no formal HTC accreditation system in the US, we will describe a number of programs and systems that are already in place to promote and measure adherence to best practices, monitor patient outcomes and encourage continual operational and clinical improvement according to established standards. Finally, we will describe various initiatives that are underway to further develop evidence-based guidelines, which may lay the foundation for a future, formalised HTC self-audit evaluation or accreditation system.

Incorporating Life Course Theory and Social Determinants of Health into the LEND Curriculum

The goal of this paper is to describe strategies for revising LEND curricula to incorporate a stronger focus on life course theory and social determinants of health (LCT/SDOH). The Maternal and Child Health Bureau (MCHB) includes a central focus on LCT/SDOH and states that a goal of Maternal and Child Health (MCH) training is to "Prepare and empower MCH leaders to promote health equity…and reduce disparities in health and health care." Two LEND programs engaged in a comprehensive process to strengthen LCT/SDOH in their curricula that included choosing content and themes and developing instructional strategies congruent with MCH Leadership Competencies and with the learning needs of LEND trainees. We describe: key elements of LCT/SDOH; the relationship of these to children with disabilities and to the MCH Leadership Competencies; LCT/SDOH resources for the LEND curriculum; a collaborative curriculum revision process for faculty; and LCT/SDOH content and themes for the LEND Curriculum and strategies for incorporating them. We present the results of our work in a format that may be used by other LEND programs undertaking curriculum revision to incorporate LCT/SDOH.

Protecting All Children's Teeth (PACT): Special Needs

OPEN ACCESSJanuary 20, 2014Protecting All Children's Teeth (PACT): Special Needs Melinda Clark, MD, David Krol Melinda Clark, MD Albany Medical Center Google Scholar More articles by this author , David Krol Robert Wood Johnson Foundation Google Scholar More articles by this author https://doi.org/10.15766/mep_2374-8265.9680 SectionsAbout ToolsDownload Citations ShareFacebookTwitterEmail AbstractAbstractProtecting All Children's Teeth (PACT) was created by the AAP Oral Health Initiative to educate medical students, residents, pediatric primary care providers, and others interested in infant, child, and adolescent health about the importance of oral health in overall health. The curriculum provides in depth coverage of child oral health, oral health guidance, and preventive care to increase comfort in recognizing dental disease and conditions and communicate with dental professionals. The 13 modules of the PACT training program comprehensively address oral health promotion, disease prevention, diagnosis, and treatment of oral health disease in children.Approximately 18% of US children and youth have a special health care need. Many of these conditions, including mental retardation, developmental disabilities, cerebral palsy, craniofacial abnormalities, and seizure disorders, can impact a child's oral health. By understanding the potential barriers to oral health care and the consequences of poor oral health in children with special health care needs, health professionals can identify at-risk patients early, provide anticipatory guidance, refer to appropriate dental professionals, and assist patients and families in overcoming barriers to accessing and utilizing care.The PACT Oral Health Curriculum has been in use since 2007 by physicians in training at the medical school and residency levels, as well as those in clinical practice. The content has been used by Pediatric, Family Medicine and Emergency Medicine physician training programs, as well as by Physician Assistants, Nurse Practitioners, Nurses, Dentists and Dental Hygienists in training and in clinical practice. Educational Objectives Recall that dental care is the most common unmet need among the special needs population.List barriers to accessing dental care.State reasons why children with special health care needs are at increased risk for caries.Complete the oral health examination checklist at routine visits.Assist families in addressing oral hygiene concerns and suggest techniques for optimizing oral care in children with special needs.Discuss appropriate timing of referral to a pediatric dentist and list conditions that mandate early referral. As this presentation is part of a complete oral health curriculum, educators and learners are encouraged to view the additional 12 courses in power-point or on-line format. The learning objectives of the entire PACT curriculum are as follows. Specific objectives are contained within each course. Upon completion of this training, participants should be able to: Cite the structures of the mouth, their locations and nomenclature, and distinguish between normal and abnormal oral anatomy.Provide anticipatory guidance to families regarding dental development, teething, oral hygiene, dietary practices, and Early Childhood Caries prevention strategies.Assess dental caries risk in young children and discuss referral options for high-risk patients.State the proper ages for initiating routine oral health screening and establishing a dental home.Describe the risk factors associated with Early Childhood Caries, and review the impact this chronic disease has on a child's overall health.Discuss the important role that fluoride plays in preventing dental caries, as well as fluorosis prevention strategies.Cite potential barriers to optimal oral health care and the consequences of poor oral health for patients with special health care needs.Address concerns and provide intervention strategies for unhealthy oral habits, such as nonnutritive sucking, teeth grinding (bruxism), and nail biting.Properly diagnose, manage, and triage common oral pathology, with appropriate reassurance or referral.Distinguish between acquired, congenital and developmental oral findings and recognize the oral manifestations of common systemic diseases.Describe the epidemiology and the complications and consequences of dental injury.Provide the immediate management of an injured tooth, appropriate triage, and anticipatory guidance regarding prevention.Prepare, educate, and empower adolescents to take control of their oral health as they move towards adulthood. Sign up for the latest publications from MedEdPORTAL Add your email below FILES INCLUDEDReferencesRelatedDetails FILES INCLUDED Included in this publication: Instructor's Guide.doc PACT-Special Needs.ppt To view all publication components, extract (i.e., unzip) them from the downloaded .zip file. Download editor’s noteThis publication may contain technology or a display format that is no longer in use. Related Protecting All Children's Teeth (PACT): Basic Oral Anatomy Protecting All Children's Teeth (PACT): Oral Health Screening Protecting All Children's Teeth (PACT): Caries Protecting All Children's Teeth (PACT): Preventive Care Protecting All Children's Teeth (PACT): Oral Injury Protecting All Children's Teeth (PACT): Oral Pathology Protecting All Children's Teeth (PACT): Fluoride Protecting All Children's Teeth (PACT): Oral Habits Protecting All Children's Teeth (PACT): Special Needs Protecting All Children's Teeth (PACT): Dental Development Protecting All Children's Teeth (PACT): Oral Findings Protecting All Children's Teeth (PACT): Oral Health in Adolescence Protecting All Children's Teeth (PACT): Systemic Diseases Copyright & Permissions© 2014 Clark and Krol. This is an open-access article publication under the terms of the Creative Commons Attribution-No Derivatives license.KeywordsPediatric Oral HealthSpecial Health Care Needs Disclosures None to report. Funding/Support The web-design of the PACT program was funded by the AAP Oral health Initiative, with support from the Maternal and Child Health Bureau (MCHB). Loading ...

Improving Maternal and Child Health Across the Life Course: Where Do We Go from Here?

In 2003 when Dr. Halfon and I published a commentary in this journal calling for a reconceptualization of racial– ethnic disparities in birth outcomes from a life-course perspective [1], few people in maternal and child health (MCH) were talking about life course. While certainly not new, it was hailed in an accompanying editorial as ‘‘a start in a new paradigm’’ in MCH [2]. The past decade has witnessed major advancements in the development of the life course theory and its application to MCH research, practice, and policy. In this issue, Halfon et al. [3] summarized new advances in the theory of life course health development (‘‘LCHD 2.0’’), while other articles provide a sample of the many innovative applications in our field. There are now websites, toolboxes, resource guides, and a research network devoted to MCH life course, and the federal Maternal and Child Health Bureau (MCHB) of the Health Resources and Services Administration is now using the life course theory as a strategic planning framework, guiding the work of the Bureau and its grantees and partners over the next decade [4]. There has been a paradigm shift in MCH, and as proclaimed in an editorial in 2009, ‘‘[t]he life course has come of age’’ [5]. So where do we go from here? The collection of articles in this issue of the MCH Journal provides a good roadmap. In this editorial, I will offer three further suggestions for how to advance life course research, practice, and policy in MCH. In research, we need to move beyond discovery to intervention research. In practice, we need to move from isolated to collective impact. In policy, we need to move beyond paying for remediation to investing in capacity formation.

Project Access: Strategies to improve care for children and youth with epilepsy: Illustrations of recommendations in the IOM report on the epilepsies

Project Access (PA), funded by the Maternal and Child Health Bureau (MCHB) of the Health Resources and Services Administration (HRSA), provided grants to state and local agencies to improve awareness, provide education, design, test, pilot and evaluate system changes, and improve quality of services and access to early diagnosis and comprehensive, coordinated health care and related services for children and youth with epilepsy residing in rural and medically underserved areas. In 2011, the Institute of Medicine of the National Academies (IOM) published a series of 13 recommendations addressing unmet psychosocial, medical, and public health needs of individuals with epilepsy, including children and youth. This paper examines the synergy between these two projects showing how the strategies utilized in the PA demonstration projects can address the IOM recommendations and how these recommendations can inform future initiatives for improving care for children and youth with epilepsy.

The Creation of the Federal MCH Extramural Research Program, 1950–1969: Lessons for Today

On April 9, 1912, the law establishing the Children's Bureau was signed by President William Howard Taft. The original mission of the Children's Bureau was to "investigate and report … upon all matters pertaining to the welfare of children and child life among all classes of our people." This paper focuses on the transitional years from roughly 1950 to 1969, when the Children's Bureau's investigative mandate was transformed from a set of intramural activities that viewed maternal and child health research as part of a larger effort cutting across investigative, programmatic, and policy goals, and across different domains of the child's life, to an extramural research program focused specifically on maternal and child health. Discussion focuses on the mission of the Maternal and Child Health (MCH) Research Program, housed now within the Maternal and Child Health Bureau (MCHB), Health Resources and Services Administration (HRSA), of the U.S. Department of Health and Human Services.

Protecting All Children's Teeth (PACT): Basic Oral Anatomy

OPEN ACCESSJanuary 31, 2013Protecting All Children's Teeth (PACT): Basic Oral Anatomy Melinda B. Clark, MD, David Krol, MD, MPH Melinda B. Clark, MD Albany Medical College Google Scholar More articles by this author , David Krol, MD, MPH Robert Wood Johnson Foundation Google Scholar More articles by this author https://doi.org/10.15766/mep_2374-8265.9335 SectionsAbout ToolsDownload Citations ShareFacebookTwitterEmail AbstractThis resource on basic oral anatomy contains a PowerPoint reviewing key anatomic structures in the mouth and typical and atypical development of these structures. It is intended to increase learners' ability to distinguish normal oral findings from abnormal ones and to communicate that information to families and other health professionals to aid in education and provision of care. Educators can download the module for presentation in a didactic lecture/discussion format or assign learners to study it on their own. It is a part of Protecting All Children's Teeth (PACT), a series created by the American Academy of Pediatrics Oral Health Initiative to educate medical students, residents, pediatric primary care providers, and others interested in infant, child, and adolescent health about the importance of oral health in overall health. The curriculum provides in-depth coverage of child oral health, oral health guidance, and preventive care to increase comfort in recognizing dental disease and conditions and communicating with dental professionals. PACT has been used since 2007 by physicians in training at various medical schools and residency levels, as well as by those in clinical practice. Educational Objectives Upon completion of this resource, participants will be able to: Recognize and properly label oral anatomic sites.Describe the location of a tooth lesion using the correct tooth name, letter or number designation, and surface label.Recall the layers of a tooth and their basic functions. Sign up for the latest publications from MedEdPORTAL Add your email below FILES INCLUDEDReferencesRelatedDetails FILES INCLUDED Included in this publication: PACT Instructor Guide.doc Oral-Anatomy Course 1 PACT.ppt To view all publication components, extract (i.e., unzip) them from the downloaded .zip file. Download editor’s noteThis publication may contain technology or a display format that is no longer in use. CitationClark MB, Krol D. Protecting All Children's Teeth (PACT): Basic Oral Anatomy. MedEdPORTAL. 2013;9:9335. https://doi.org/10.15766/mep_2374-8265.9335 Related Protecting All Children's Teeth (PACT): Basic Oral Anatomy Protecting All Children's Teeth (PACT): Oral Health Screening Protecting All Children's Teeth (PACT): Caries Protecting All Children's Teeth (PACT): Preventive Care Protecting All Children's Teeth (PACT): Oral Injury Protecting All Children's Teeth (PACT): Oral Pathology Protecting All Children's Teeth (PACT): Fluoride Protecting All Children's Teeth (PACT): Oral Habits Protecting All Children's Teeth (PACT): Special Needs Protecting All Children's Teeth (PACT): Dental Development Protecting All Children's Teeth (PACT): Oral Findings Protecting All Children's Teeth (PACT): Oral Health in Adolescence Protecting All Children's Teeth (PACT): Systemic Diseases Copyright & Permissions© 2013 Clark and Krol. This is an open-access article publication under the terms of the Creative Commons Attribution-No Derivatives license.KeywordsPACT Disclosures None to report. Funding/Support The web-design of the PACT program was funded by the AAP Oral health Initiative, with support from the Maternal and Child Health Bureau (MCHB). Prior Presentations None to report. Loading ...

Looking at Graduates of Title V MCHB-Funded Training Programs Through the Lens of the MCH Pyramid

To examine the distribution of professional responsibilities as reflected in each level of the MCH Pyramid for 208 graduates of five Maternal and Child Health Bureau (MCHB)-funded training programs-Leadership Education in Neurodevelopmental and Related Disabilities, nutrition, pediatric dentistry, public health, and social work-at the University of North Carolina at Chapel Hill. Graduates completed a web-based survey, 1-8years after graduation. For each program, we constructed means of the reported percentages of total work time spent in infrastructure-building, population-based, enabling, and direct health care services. Although generally consistent with the goals of the training programs, the percentages of time spent in each level of the Pyramid varied substantially among the five programs. For example, for a clinically focused program like pediatric dentistry, 80.2% of time is spent in direct care services in contrast to 14.8% for public health graduates. For each program, however, graduates report responsibilities among the different levels of the Pyramid. Reporting job responsibilities within the MCH Pyramid provides a more informative picture of the contributions of training program graduates than do conventional metrics such as institutional or agency appointments. The fact that graduates from all five programs engage multiple roles is consistent with the MCHB workforce training goal to develop leaders in the field of MCH. Given the central role of the MCH Pyramid in planning and reporting for the MCH Services Block Grant, MCH training programs should include metrics such as graduates' roles according to the MCH Pyramid to assure that training goals are more closely aligned with workforce needs.