A HISTORY OF THE COMMONWEALTH FUND’S CHILD DEVELOPMENT AND PREVENTIVE CARE PROGRAM CYNTHIA A. CONNOLLY AUGUST 2013 The Commonwealth Fund, among the first private foundations started by a woman philanthropist—Anna M. Harkness—was established in 1918 with the broad charge to enhance the common good. The mission of The Commonwealth Fund is to promote a high performing health care system that achieves better access, improved quality, and greater efficiency, particularly for society’s most vulnerable, including low-income people, the uninsured, minority Americans, young children, and elderly adults. The Fund carries out this mandate by supporting independent research on health care issues and making grants to improve health care practice and policy. An international program in health policy is designed to stimulate innovative policies and practices in the United States and other industrialized countries. Photo credits: Cover (top): The Commonwealth Fund archives. Cover (bottom): Dan Lamont. Pages 10 & 36: Dwight Cendrowski. A HISTORY OF THE COMMONWEALTH FUND’S CHILD DEVELOPMENT AND PREVENTIVE CARE PROGRAM CYNTHIA A. CONNOLLY AUGUST 2013 Abstract: The Commonwealth Fund has a nearly century-long role in the improvement of children’s health in the United States. This histori- cal monograph examines the foundation’s more recent efforts to cre- ate an integrated model of well-child care capable of addressing chil- dren’s cognitive, emotional, and social development needs. The author focuses on the creation and implementation of initiatives that began in the 1990s under the Child Development and Preventive Care Program. Support for this research was provided by The Commonwealth Fund. The views presented here are those of the author and not necessarily those of The Commonwealth Fund or its directors, officers, or staff. To learn more about new publications when they become available, visit the Fund’s website and register to receive email alerts. Commonwealth Fund pub. 1693. CONTENTS ABOUT THE AUTHOR..................................................................................................................... 6 ACKNOWLEDGMENTS................................................................................................................... 6 PREFACE........................................................................................................................................... 7 INTRODUCTION.............................................................................................................................. 9 PART I. MAJOR 20TH-CENTURY TURNING POINTS IN DESIGNING WELL-CHILD CARE.........................................................................................................11 PART II. NEW SOLUTIONS FOR OLD PROBLEMS: ABCD AND THE CHILD DEVELOPMENT AND PREVENTIVE CARE PROGRAM.................................19 PART III. RETHINKING WELL-CHILD CARE: HOW THE COMMONWEALTH FUND PROVIDED THE TOOLS FOR CHANGE........................ 27 PART IV. “PURCHASING” CHILD HEALTH IN THE 21ST-CENTURY UNITED STATES............................................................................................................. 37 NOTES.............................................................................................................................................. 41 LIST OF EXHIBITS EXHIBIT 1 ENDURING CHANGES OF ABCD I STATES EXHIBIT 2 MEDICAID–ABCD POLICY CHANGES: 32 STATES PROMOTE STANDARDIZED DEVELOPMENTAL SCREENING ABOUT THE AUTHOR Historian and pediatric nurse practitioner Cynthia A. Connolly, Ph.D., R.N., FAAN, is associate professor at the University of Pennsylvania School of Nursing, where she holds fellowships at the Barbara Bates Center for the Study of the History of Nursing, Leonard Davis Institute of Health Economics, and The Alice Paul Center for Research on Gender, Sexuality, and Women. She is also co-faculty director at the Field Center for Children’s Policy, Practice, and Research at the university. Connolly’s research analyzes the historical forces that have shaped children’s health care delivery and family policy in the United States. Her training in history and policy and her more than thirty years as a pediatric nurse provide a valuable lens through which to study enduring issues in funding and delivering children’s health care in the United States, especially for the nation’s most vulnerable children. Her most recent book, Saving Sickly Children: The Tuberculosis Preventorium in American Life, 1909–1970, received the Lavinia Dock Award from the American Association for the History of Nursing and was supported by numerous research grants, including a Scholarly Award in Biomedicine and Health from the National Library of Medicine/National Institutes of Health. Her current research on the history of children and pharmaceutical policy since the 1930s is funded through a Robert Wood Johnson Foundation Investigator Award in Health Policy Research grant. A book based on this research is under contract with Rutgers University Press. ACKNOWLEDGMENTS I am very grateful for the opportunity to have studied The Commonwealth Fund’s Child Development and Preventive Care (CDPC) program. Like most historians, I approached this topic with a skeptical eye, but the documentary evidence and stakeholders with whom I spoke revealed an innovative and cost-effective story that needed to be preserved and drawn upon as a useful template for making policy and practice change. I have appreciated my many conversations with Janet Golden, Ph.D., about the history of children’s health. They have sharpened my analysis and broadened my perspective. The CDPC program’s accomplishments are all the more impressive when considered against the backdrop of historical challenges to funding and delivering well-child care in the United States. I am grateful to the many scholars who made time to talk with me; my discussions with them amplified the documents and other primary sources that informed this project. I appreciate former Commonwealth Fund program associate Cara Dermody for helping me organize volumes of data. Finally, I am particularly grateful to Ed Schor, M.D., and Melinda Abrams, M.S. Each spent many hours talking with me, discussing the fine points of my analysis, pointing me toward new resources, and reading numerous drafts of this monograph. Editorial support was provided by Joris Stuyck. 6 A HISTORY OF THE COMMONWEALTH FUND’S CHILD DEVELOPMENT AND PREVENTIVE CARE PROGRAM PREFACE The Commonwealth Fund is proud to be among the U.S. philanthropic foundations that have for decades been a force for positive social change. One of the areas where the Fund’s historical impact has been most visible is child health. In the 1920s, The Commonwealth Fund developed and informed the new field of child guidance to provide mental health services for children. During this era, the foundation also supported the first fellowships in child psychiatry and established children’s community clinics. And model public health clinics established by the Fund spurred initiatives to reduce maternal and infant mortality. Much more recently, the Program on Child Development and Preventive Care—the subject of this historical overview—supported states in their efforts to expand the delivery of developmental and behavioral services, particularly to children in low-income families. As a result of the program’s efforts in the 2000s, screening and referrals for developmental problems have now become standard features of modern pediatric practice. In this monograph, Cynthia Connolly traces the history of one of The Commonwealth Fund’s most successful endeavors. Through exhaustive archival research and interviews with the key movers in early child development and health policy, she explains how a group of committed individuals were able not only to effect wholesale changes in policy, but ultimately to make a real difference in the lives of children and their parents. David Blumenthal, M.D., M.P.P. President The Commonwealth Fund www.commonwealthfund.org 7 significant new monies, programmatic options, and INTRODUCTION incentives, it also mandated the use of a core set of qual- In March 2010, President Barack Obama signed the ity measures for all pediatric care covered by Medicaid Patient Protection and Affordable Care Act (PPACA) and CHIPRA programs. into law. Designed to reform the health insurance mar- Among the measures chosen by the federal ket in the United States and thereby improve access to Centers for Medicaid and Medicare Services (CMS) care for more than 30 million uninsured Americans, its was one that required “[s]creening using standardized provisions were structured to become effective by 2014.1 screening tools for potential delays in social and emo- Along with broadening access to care, improving qual- tional development.” In order to be chosen for inclu- ity, and placing a new emphasis on care coordination, sion, each measure needed a sturdy body of evidence the act was celebrated by its champions for its focus on attesting to its importance and feasibility. The CMS clinical preventive services, health screenings, and sur- had been convinced of the need for this measure based veillance of well patients.2 on the evidence presented by the Assuring Better Child The Affordable Care Act stands to transform Health and Development (ABCD) Screening Academy, children’s health care delivery. Not only does it promise a major initiative of The Commonwealth Fund.5 to provide greater stability to poor families with chil- Why did The Commonwealth Fund create this dren by reducing the numbers of uninsured parents, for initiative? What did the ABCD program discover about example, the law makes it impossible for private insurers well-child care and providing developmental services to to deny coverage to children because of preexisting con- indigent infants and young children that helped it shape ditions. However, many of the other concepts embedded a major piece of legislation? This monograph traces the in the PPACA are not new at all.3 More than a century history of the ABCD initiative and of the program in before its passage, physicians, nurses, and other health which it was nested, The Commonwealth Fund’s Child care reformers had begun building a care delivery model Development and Preventive Care (CDPC) program. for children that broadly emphasized health promotion Specifically, it considers how the CDPC worked suc- and disease prevention for well children, in addition to cessfully to convince parents, payers, health care provid- caring for them when they were ill.4 ers, and policymakers of the importance of develop- Those ideas would later become the conceptual mental screening in well-child care. underpinnings of well-child care, and were considered The emphasis of this monograph is on The important enough to be codified in publicly funded Commonwealth Fund’s recent efforts to improve the initiatives such as the 1920s Sheppard–Towner Act delivery of well-child care in the first years of the 21st and the Early and Periodic Screening Diagnostic and century. However, these recent efforts should first be Treatment (EPSDT) program, created in the 1960s to placed in the context of the foundation’s involvement in ensure that indigent youngsters received needed com- pediatric health care and well-child care over the past prehensive developmental services, and, in the 1990s, century. Only in this way is it possible to fully appreci- the Children’s Health Insurance Program (CHIP), ate the Fund’s successes, the challenges it faced, and its which provided insurance coverage for poor and near- development of the platform on which it mounted the poor children. Now those principles would extend program. beyond pediatric practice into adult health care delivery. Part I explores the development of well-child One central feature of the Affordable Care care in the United States in the 20th century, focusing Act is an expanded focus on measuring the quality and on turning points and emphasizing Commonwealth outcomes of care, a landmark change that was strongly Fund initiatives and their contributions to child health influenced by the most recent reauthorization of CHIP. care, from those of the 1920s through Healthy Steps for The 2009 Children’s Health Insurance Reauthorization Young Children, in the 1990s. Part II traces the creation Act (CHIPRA) not only provided states with www.commonwealthfund.org 9 of ABCD and the CDPC program, and provides an intellectual history of the theories and philosophies informing them. Part III examines how the CDPC pro- gram built momentum for change, engaged stakehold- ers, generated evidence, and, by so doing, was poised to capitalize on a particular policy window to effect sus- tainable change in well-child care in the United States. Finally, Part IV analyzes the lessons learned from ABCD and the CDPC program and considers them in the context of enduring issues in American society, chil- dren’s health care delivery, and 21st-century challenges to effecting policy change. 10 A HISTORY OF THE COMMONWEALTH FUND’S CHILD DEVELOPMENT AND PREVENTIVE CARE PROGRAM New York City’s activist general medical officer: PART I. MAJOR 20TH-CENTURY “Public health is purchasable.”9 TURNING POINTS IN DESIGNING This sentiment resonated with reformers com- WELL-CHILD CARE mitted to improving the health and welfare of children in a nation experiencing the challenges of rapid growth, There are few things more vital to the welfare increasing urbanization, and the bureaucratization of of the nation than accurate and dependable previously informal mechanisms for providing health knowledge of children.6 and social welfare services. The Fund’s new initiative —Theodore Roosevelt (1910) also meshed with the philosophy of America’s leading pediatrician, Abraham Jacobi, who argued that pedi- atrics required a new paradigm, one that moved away Child Health Is Purchasable from illness-oriented medical specialties focused on The Fund’s nearly century-long role in children’s health discrete organ systems or particular diagnostic tech- began soon after its founding in 1918. At the time, nologies. Pediatricians, Jacobi admonished, needed to there were no federal or state initiatives for children’s think about the “whole” child, addressing issues such as health. Those municipalities providing any such ser- feeding and growth in addition to therapeutics for sick vices at all did so in a fragmented fashion: school health youngsters.10 services, municipal health departments, and private Consequently, as World War I ended, The physicians almost always operated independently of Commonwealth Fund strove to integrate the strategies one another. In this context, when the Fund announced of the 19th-century voluntary charitable organiza- a community-based pilot project focused on children’s tions—which provided funds and services to “deserving” health, the New York Times considered it worthy of petitioners—with the organizational and epidemiologi- mention.7 cal research ethos of the modern public health depart- The Fund’s program was launched at a time ment.11 Its Child Health Demonstration Committee when the nation was increasing its attention to chil- ardently hoped to persuade the American public that dren’s well-being. Theodore Roosevelt was one of the health screenings, coordination of care, and other stra- first presidents to envision the nation’s destiny in terms tegic societal “purchases” on behalf of children would be of its commitment to children. A few years before, he worthy, cost-effective investments: by improving health had devoted a White House conference to children’s outcomes, they would strengthen the nation’s workforce issues, thus generating a national discussion on child and also its military. health and welfare that had resulted in 1912 in the cre- In the 1920s, Commonwealth Fund pediatric ation of the Children’s Bureau—a federal agency dedi- efforts coincided with the evolution both of pediatrics cated entirely to children and their well-being. as a medical specialty and of the beginning of American There was another national shift under way, health policy. Pediatricians, public health nurses, and as well—a major epidemiological shift caused by the other reformers debated how best to translate into rapid decline in infant mortality and child deaths from practice new concepts emerging from the field of psy- infectious disease.8 Leading scientists and health pro- chology and how best to integrate the systems of child fessionals agreed in attributing these gains to the work welfare and health care. These discussions led to major of public health departments, whose funding went to Commonwealth Fund initiatives in juvenile delinquency improve sanitation, to ensure the purity of milk and prevention and child guidance. Although an attempt water, to educate the public, and to screen the public for to achieve compulsory national health insurance had diseases. The belief that fiscal investment could produce recently failed, the Sheppard-Towner Act—the first quantifiably improved health outcomes was summed federal health-oriented legislation—was enacted in up in the memorable statement of Hermann M. Biggs, 1921. This statute provided federal funds to states for www.commonwealthfund.org 11 maternal and child health education and for disease- organizations, resulted in a growing demand by parents prevention and health-promotion campaigns, but there for preventive care for their children. By the 1930s, one- were as yet few accepted guidelines beyond those of third to one-half of children’s visits to physicians were tracking children’s heights and weights.12 for what pediatricians classified as well-child care.15 One of the Fund’s initiatives was a child health Although the benchmarks for child health in that era demonstration that hoped to use its pilot locations— largely constituted measuring height and weight and Fargo, North Dakota; Athens, Georgia; Rutherford identifying physical anomalies, the Fund also commit- County, Tennessee; and Marion County, Oregon—as ted significant resources to its juvenile-delinquency and laboratories for defining a model for preventive pedi- child-guidance programs in the hope of promoting pos- atrics. The most basic goal of the child health demon- itive family functioning and improving children’s social stration was to bring into the health care system all the and psychological well-being.16 children in each study area. The advisory committee Children’s care in the United States suffered a also hoped to be able to make recommendations about serious setback in the late 1920s when Congress failed ways in which communities could reduce duplication to reauthorize the Sheppard-Towner Act. The pas- and poor communication among the diverse sites— sage in 1935 of the Social Security Act created Title including schools, health departments, and the offices IV, which offered states financial assistance to support of private physicians—at which children received health needy children. Through Title V, the law resurrected care.13 many of the programs from the Sheppard-Towner Act, The Commonwealth Fund soon had in place authorizing funding to states for health promotion a structured program of preventive services. At regu- for poor mothers and children. However, unlike other lar “health conferences,” children could be weighed components of the Social Security Act, such as the pen- and benchmarked against new national normative sion plan that included all retirees regardless of income, data, and at the same time examined for defects and children’s benefits, with a few exceptions, were limited health problems. At the conferences, parents could be according to social class, available to indigent children instructed on issues such as feeding and child-rearing, only. Moreover, while the retirement entitlement was potentially resulting in material gains such as reduced enacted as a federal initiative, children’s programs under rates of infant and child mortality. Over the course of the Social Security Act were to be provided by a com- the study, from 1923 to1927, Fargo documented a 50 plicated matrix of federal and state responsibility.17 percent reduction in infant and child deaths from com- By this time, nearly all political discussions sur- municable disease in those families who participated in rounding children’s health were class-based, a perspec- the demonstration. Marion County reduced its infant tive that would profoundly influence the contours of mortality rates by 22 percent, while the rest of Oregon ensuing child health policy in the United States. While saw a decline of only 13 percent. Importantly, each pilot education for all children, poor and nonpoor alike, had community judged the demonstration to be so success- been a recognized responsibility of government as early ful (and cost-effective, thanks to reduced expenditures as the mid-19th century, there was no discussion of a in other areas, such as the treatment of communicable similar universal approach to children’s health. Indigent diseases) that local governments restructured to main- children’s health was examined through the limiting tain the services it had established; this accomplishment lens of social welfare and poverty policies, while policy- was all the more impressive given that localities saw it makers assumed that the health needs of middle-class through in the early years of the Great Depression.14 children could be flexibly met by parents and health The achievements of the demonstration cit- care providers as they saw fit. This segregation of medi- ies, in tandem with a host of child health campaigns cal benefits made it virtually impossible to create a com- sponsored by the Children’s Bureau and voluntary prehensive national approach to the needs of children.18 12 A HISTORY OF THE COMMONWEALTH FUND’S CHILD DEVELOPMENT AND PREVENTIVE CARE PROGRAM The Postwar Era: Growth and In 1949, The Commonwealth Fund published Development of the Well-Child Care the results of a two-year collaborative study by the Concept American Academy of Pediatrics, the Public Health By the end of World War II, the importance of well- Service, and the Children’s Bureau.21 The report, Child child care had been established in the minds of the Health Services and Pediatric Education, called for bet- American public; parents expected their children’s doc- ter training of physicians in the provision of well-child tors to offer preventive as well as curative care. The care, more pediatric education for all medical students, postwar period presented another opportunity for pro- an increase in the number of pediatricians, and a more fessionals and policymakers to consider what a coordi- holistic, coordinated approach to well-child care. nated care system for children should look like. By the Pediatric leaders celebrated the report for its exhaustive late 1940s, American children as a group were healthier accumulation of data, which quantified known problems than ever before. Ongoing improvements to the public such as lack of access to care. health infrastructure, together with the advent of anti- By “turn[ing] opinions into facts,” wrote biotic therapy, meant a steep decline in the number of Katherine Bain, director of the Division of Research children hospitalized or placed in convalescent wards in Child Development at the Children’s Bureau, the for recuperation from such diseases as tuberculosis and report provided important information about problems rheumatic fever. in pediatric health care delivery. But Bain presciently Now, many youngsters who contracted acute warned that addressing the inadequate supply of physi- bacterial infections such as pneumonia could be cured, cians and the maldistribution of services would be much and those with chronic conditions such as cystic fibrosis easier than assuring the quality of that care: “Any sys- or sickle-cell anemia could survive the infections that tem devised to meet the deficiencies in ‘quantity’ of ser- often accompanied the disease. Immunizations for com- vices rendered to children, which merely succeeded in municable diseases such as smallpox and diphtheria spreading mediocre ‘quality’ services more evenly, would were available, and one for polio was on the horizon. be of questionable benefit.”22 The nation’s leading pediatricians, relieved that the Bain and other pediatricians also considered United States had survived the Depression and World the report especially important because it documented War II, now set out to address the health needs of what many of them had feared: children’s access to care the well child and consider how best to make quality varied significantly by race, socioeconomic status, and health services available to all children. In 1947, Yale geographic region. Although more and more middle- University pediatrician and psychologist Arnold Gesell class children were being covered through the emerging pressed his colleagues to think about the new era upon voluntary insurance programs, poor children were not; them. At the annual meeting of the American Academy they lacked access not just to the latest medical and sur- of Pediatrics, Gesell spoke about the “vast domain” of gical therapeutics, but to such basic preventive services preventive pediatrics and the central role it needed to as immunizations and dental care. 23 play in pediatricians’ practice going forward.19 But there The definition of “quality care” remained was one major obstacle facing the vision of Gesell and elusive. Moreover, at a time when American soci- others: the nation had too few pediatricians—the exist- ety was embracing hospital care and private-practice ing 2,600 board-certified pediatricians oversaw the care medicine as its preferred care model, the idea of the of only 10 percent to 20 percent of American children. planned, coordinated network of health resources that Worried that this situation would hamper children’s had defined the Fund’s 1920s child health demon- health and national strength in the postwar era, the stration fell out of favor. The emerging framework, American Academy of Pediatrics sought to partner with for child as well as for adult care, was disease- and the government to address it.20 technology-based, focused on acute care for complex www.commonwealthfund.org 13 chronic illnesses such as cancer or disabilities such as indigent children, there were new initiatives aimed at cerebral palsy. The funding streams that once went to improving their cognitive and emotional development the Children’s Bureau to support public health innova- and educational outcomes (e.g., Head Start). Also, the tions increasingly went toward hospital-based training new Supplemental Nutrition Program for Women, for physicians, who finished their educations with little Infants, and Children (WIC) provided nutritious food experience in providing well-child care, even though to pregnant women and young children. These social much of physicians’ time in practice went to providing welfare programs now supplemented those enacted preventive pediatric care.24 decades earlier through the Social Security Act. The postwar interest in children evinced by Although these programs were funded and policymakers crystallized during the 1960s as the put in place, little attention was paid to making sure cultural effects of the population surge of the baby that they cohered with one another or collectively boom on American society increased.25 The growing addressed the needs of very young poor children. In scientific and political interest in early-life develop- 1967, Congress amended Medicaid legislation to ment and its implications for later outcomes led to authorize a major program aimed at bringing together an explosion of interest in the factors that shape chil- the programmatic silos dividing the educational, health dren’s growth, development, and learning. In 1961, care delivery, and social welfare sectors. It was called President Kennedy’s sister Eunice Shriver persuaded the Early Periodic Screening, Diagnosis, and Treatment him to propose the creation of the National Institute (EPSDT) Act. This statute required state Medicaid of Child Health and Development (NICHD), the first agencies to provide developmental services for all NIH institute not focused on a disease or organ sys- low-income youngsters, to screen them for potential tem. Although several foundations, among them The handicapping conditions, and to make sure that identi- Commonwealth Fund, were managing long-standing fied conditions received the necessary treatment.28 The research programs that had significantly increased middle and late 1960s presented one of the most pub- knowledge of infant and child development, the lic discussions of child poverty and its concomitant ill NICHD now pumped large sums of new money into health, lack of opportunity, and malnutrition that the the field. With the NIH replacing foundations as the nation had ever seen, brought into American homes primary funder of research, the Fund shifted its atten- by the cameras following Senator Robert F. Kennedy tion not only to the training of physicians, but also to through the Mississippi delta in 1967.29 emerging roles such as that of nurse practitioners.26 Most pediatricians of the era addressed con- By the mid-1960s, tectonic shifts had also siderations of “development” less through health- occurred in the financing of health care. The old, largely promoting interventions than by diagnosing and treat- self-pay or charity-supported care model had been ing disorders that were defined as “organic,” such as firmly supplanted by private, employer-sponsored health cerebral palsy or genetic disorders resulting in mental plans that covered most working Americans and by retardation. This approach was actualized by new fund- Medicare and Medicaid, the new government programs ing streams aimed at the cognitive sequelae of these intended to cover the elderly and the poor, respectively.27 conditions. Little research was undertaken into how Although Medicaid was almost an afterthought and when to screen children for development-related when it was enacted in 1965, it would grow to have conditions and how to integrate into clinical practice profound influence over the health of America’s most the emerging body of evidence coming from the new vulnerable children, becoming the template upon which field of developmental psychology. Although pediatri- subsequent health policies for indigent children would cians agreed in principle on the importance of develop- be layered. In addition to those Medicaid programs mental screening, it wasn’t until 1967 that the American designed to advance access to basic health care for Academy of Pediatrics published its first “periodicity” 14 A HISTORY OF THE COMMONWEALTH FUND’S CHILD DEVELOPMENT AND PREVENTIVE CARE PROGRAM schedule, establishing the first significant standards and disabling conditions. (It was amended in the 1980s to recommendations for the sequence and timing of child- include children under age 3.) Legislation in the late hood immunizations.30 1980s broadened the types of services available through The goal of bringing services for poor children EPSDT. Its success was limited, however; the evidence together under one umbrella and expanding Medicaid suggested that only 25 percent to 35 percent of all eli- services beyond the field of illness care remained elu- gible children received a well-child visit.34 sive. The legislative language for EPSDT was vague in Within pediatric medicine, as subspecial- key areas, so lines of responsibility remained unclear. ties such as cardiology, endocrinology, and neonatal- Statutory language, for example, mandated evaluating ogy matured in the 1970s and 1980s, there were also children for “physical or mental defects” and required a number of attempts to shift the focus in health care states to take corrective action, but offered little in the toward more and better preventive care for children and way of guidance, leaving the states to define how best a more holistic approach to pediatrics.35 One model for to achieve this goal.31 Additionally, many states felt achieving these ends was the notion of “community- they lacked the resources to implement the statute as oriented primary care” (COPC). The tenets of COPC intended, that is, by providing a full range of multidis- were similar to those laid out by Abraham Jacobi, which ciplinary, interagency services for all infants and tod- had informed the Fund’s child health demonstration dlers with developmental delays or disabilities. As a in the 1920s and 1930s. COPC reflected a recognition result, states and municipalities interpreted their roles that the social factors underpinning health and illness independently, resulting in a patchwork of services with needed just as much attention from pediatricians as did wide variability according to place and time. The law’s targeted disease-based intervention.36 Those pediatri- full potential was limited by confusion about imple- cians who supported COPC believed not only in better mentation, by ambivalence on the part of legislators and organization for pediatric primary care services, but also policymakers about funding poverty-related programs, in the need for pediatricians to engage more with child and by the complexity of many children’s needs.32 development. Physicians, following the lead of Julius In the early 1970s, another attempt to enact Richmond, M.D., the first national director of Head national health insurance, led this time by President Start, saw the field of child development as the “basic Nixon, failed. So did the Comprehensive Child science” that should undergird the practice of pediat- Development Bill (CCDB), designed to draw together rics; this perspective was all the more vital, they argued, initiatives interspersed throughout the health care, given the recent emergence of “new morbidities” rooted education, and social welfare sectors. There was little in developmental, behavioral, educational, or psychoso- support for CCDB’s goal of providing developmental cial problems caused by family stressors and social and services through a coordinated national framework for economic pressures such as poverty.37 all children, not just those who were poor. A few years later, the Carter administration’s Medicaid expansion “Healthy Steps” to a New Model for proposal (the Child Health Assessment Program), Pediatric Primary Care which was intended to expand coverage to 700,000 By the 1990s, the federal government had continued poor children under the age of six years, did not even to expand its role in, and its funding for, the provi- come to a vote in Congress.33 sion of health care for children. Growing numbers of Despite these failures, reformers could claim a youngsters of the working poor and new populations number of legislative victories in the 1970s and 1980s. of disabled children benefited from successful attempts The 1975 Education for All Handicapped Children to extend income eligibility criteria for targeted groups. Act (Public Law 94-142) mandated a free public educa- Between 1979 and 1996, for example, the rate of diag- tion for all young people ages 3 to 21, even those with nosis of attention deficit hyperactivity disorder and www.commonwealthfund.org 15 autism increased dramatically.38 Clinicians believed the and the great variability of developmental screening severity of many of these conditions could be reduced availability.43 with early identification and intervention, but pedia- The importance of containing the cost of tricians were increasingly reporting that they lacked American health care assumed new urgency as the per- evidence to justify the type and substance of their pre- centage of the gross domestic product (GDP) devoted ventive care interventions.39 This situation was in stark to health care increased rapidly. Consequently, the contrast to the growing body of rigorous evidence that 1990s brought heightened discussions about health care supported disease-related decision-making.40 quality per dollar expended, which, despite Katherine Meanwhile, well-child care remained mostly Bain’s suggestions of 40 years earlier, had not been cap- tradition-bound. It was scheduled according to the tured for either children or adults. The fledgling debates immunization timetable, not according to the critical surrounding health care quality focused mostly on adult moments in child growth or the identified periods of care, however, while failing to address the needs of the parental vulnerability.41 As pediatrician and child health developing child. Those few leaders in the nascent pedi- services researcher Neal Halfon, M.D., M.P.H., later atric quality movement argued that assessing the ben- noted, the potential for early intervention based on efits to children of preventive pediatrics required a new developmental screening was largely untapped: paradigm, one that would move beyond quantifying immunization rates to incorporate robustly measured [W]e were beginning to talk about the fact best practices of care for those youngsters with devel- that most well-child care followed the peri- opmental vulnerabilities, and would provide the eviden- odicity schedule established decades ago when tiary base for those practices.44 infectious disease prevention still needed to Ambitious attempts were under way to trans- be the major focus for pediatricians. But by late into practice the new evidence emerging from the the 1990s, we lived in a more “psychosocial” developmental sciences, chief among them the Bright world. While residents learned how to treat Futures campaign, which was sponsored jointly by the an ear infection, they didn’t know what to do Maternal and Child Health Bureau and the American about a child who couldn’t read on schedule or Academy of Pediatrics (AAP). Bright Futures expanded one whose parents couldn’t pay the rent . . . .42 the traditional periodicity schedule with a set of guide- lines that included more psychosocial and developmen- tal services. Important obstacles, however, stood in the Like the 1920s and the early post–World War way of incorporating those guidelines into routine pedi- II era, the 1990s represented a fresh opportunity to atric practice for all children. Many clinicians perceived reframe the way in which child health care was deliv- developmental screening as too time-consuming, and ered in the United States. An explosion of new science few believed they could be reimbursed for these services in the areas of developmental psychobiology, neurobiol- through Medicaid or even private insurers. And, if they ogy, genetics, and social science revealed that very early did identify a problem, many pediatricians lacked guid- experiences affected later development in ways previ- ance on how to proceed.45 ously unrecognized. These findings attracted bipartisan In 1994, Commonwealth Fund president political interest in early-childhood growth and devel- Margaret Mahoney announced an ambitious multi- opment. Republican president George Herbert Walker year, multisite $4.5 million demonstration, the Healthy Bush proclaimed the 1990s to be the “Decade of the Steps for Young Children program. Built on a success- Brain,” while a few years later Democratic president ful pilot program at Boston Medical Center, Healthy Bill Clinton’s health care reform proposal attempted Steps added a new health professional, the Healthy to address the large numbers of uninsured children Steps Specialist, to the health care team. He or she 16 A HISTORY OF THE COMMONWEALTH FUND’S CHILD DEVELOPMENT AND PREVENTIVE CARE PROGRAM would monitor the child’s development, attend closely economist and deputy assistant secretary for health to growth-related issues, and respond to parental con- policy. Now she wanted to generate information about cerns through a menu of services such as home visits, what help parents felt they needed from their children’s telephone support, and support groups. Mahoney, who health care providers in order to function more effec- became chair of the National Advisory Committee for tively as parents. The study was called the National Healthy Steps the next year when she retired from the Survey of Parents with Young Children. Fund, stressed that the time was auspicious for Healthy It took as its base a representative sample of Steps: 2,000 parents with children under the age of three years. The findings reinforced the significance of stressors Fresh insights are emerging from science faced by families in the 1990s, an era in which there about the importance of the first three years of was wide recognition that, with the majority of moth- life; mothers and fathers are saying they want ers now working outside the home, American society to know more about fostering their young had undergone a fundamental change.49 The survey also child’s well-being . . . . [I]t is a time when yielded a finding that surprised many professionals: a promise of better care at good value can be from the perspective of parents, there were crucial ways tested.46 in which the health care delivery system was not meet- ing their needs. Only 58 percent of parents, for example, Kathryn Taaffe McLearn, Ph.D., an early- reported that they received enough help from their childhood health and development specialist, was child’s health care provider to be able to translate into recruited by Mahoney to lead Healthy Steps. Unlike daily life the new research on brain development in previous demonstrations, Healthy Steps was designed young children. Most had questions about nonmedical as a cooperative venture that encouraged collaboration; issues such as discipline, feeding, and toilet training but it ultimately attracted $16 million in contributions from were uncertain as to whom to ask for advice. Only one more than 50 funders linked together in creative local of five reported receiving information on topics such and national partnerships.47 Healthy Steps was also as injury prevention, nutrition, and child development, innovative in that it incorporated an evaluation mecha- all considered by the AAP to be important areas for nism, overseen by researchers from the Johns Hopkins parents to understand. Screening for conditions such as Bloomberg School of Public Health.48 But the Healthy maternal depression that were known to impact family Steps program was especially novel because it harkened functioning and child development was addressed in a back to the 1920s Commonwealth Fund demonstra- widely variable fashion. At a time when cost-reduction tions in that it examined the issue of designing an strategies resulted in mothers being discharged from integrated model of pediatric primary care through a many hospitals only a few hours after childbirth, many lens that focused on all children, both wealthy and poor, new parents reported feeling overwhelmed by their new instead of considering needs based on social class. responsibilities. Finally, the survey revealed that lower- In 1997, the first 15 evaluation sites chosen for income families felt the financial and emotional strain the Healthy Steps demonstration began to implement of child-rearing more severely than those at higher a curriculum designed by Barry Zuckerman, M.D., socioeconomic levels. This finding bolstered already and his colleagues at the Boston University School of strong evidence that lower-income children were at Medicine. Simultaneously, the Fund embarked on a the highest risk for growth- and development-related study that was the first of its kind, a survey proposed problems.50 by the Fund’s new president, Karen Davis. Davis The survey’s findings supported the ideas had served under the Carter administration in the underpinning Healthy Steps: parents needed and Department of Health and Human Services as a health www.commonwealthfund.org 17 wanted more than just disease diagnosis from their chil- dren’s care providers. They sought guidance on child- rearing and advice regarding how best to help their child develop physically, emotionally, cognitively, and socially in the context of a healthy and stable family life. Spurred by Fund-sponsored training seminars and other dissemination strategies, by the late 1990s 21 practices around the nation had Healthy Steps Specialists on staff, and both parents and care providers were reporting widespread satisfaction with the pro- gram. Nonetheless, from the very beginning Healthy Steps supporters recognized a major challenge facing the Healthy Steps model: how to sustain its benefits after the external funding expired. Who would pay the salaries of the Healthy Steps Specialists in a health care system coming under more financial pressure with each passing year? Despite its cooperative and coordinated nature, built-in evaluation, and ambitious goal of bringing a universal, evidence-based model of pediatric preven- tive care, Healthy Steps faced formidable obstacles to permanence. The lack of a built-in and stable funding stream to reimburse clinical agencies for the Healthy Steps Specialist’s salary and services ultimately became the greatest challenge to the Healthy Steps program’s reproducibility and growth on a national scale. The Fund and others interested in infusing a broader set of services, such as sophisticated developmental screening and child-rearing advice, into well-child care knew that in order to achieve sustainability in American health care delivery, payers—not just practitioners and par- ents—needed to become stakeholders in developmental services for young children. 18 A HISTORY OF THE COMMONWEALTH FUND’S CHILD DEVELOPMENT AND PREVENTIVE CARE PROGRAM PART II. NEW SOLUTIONS FOR programs. Also now in transition were models for health care financing. Going forward, more children, OLD PROBLEMS: ABCD AND both publicly and privately insured, would receive medi- THE CHILD DEVELOPMENT AND cal services through managed care. By the late 1990s, PREVENTIVE CARE PROGRAM this change was having a major effect on children, since more than 85 percent of all Medicaid managed-care Until The Commonwealth Fund’s Child enrollees were either children or women of childbearing Development and Preventive Care Program, age.52 everyone was stuck. Despite decades of try- Commonwealth Fund president Karen Davis ing, no one knew how to incorporate devel- wanted the Fund to take a leadership role in shap- opmental screening for children into practice ing policy to respond to this new health care delivery in a systematic, coordinated, cost-effective, context. Davis, an economist, believed that policy evidence-based fashion. The CDPC program formulation must be based on data. She stressed the showed a way of doing it, importantly, one importance of the Fund’s own Survey of Parents with that didn’t take a lot of money or an act of Young Children and the forthcoming National Survey Congress. of Early Child Health. Davis saw that these question- —Kay Johnson, M.P.H., M.Ed. (2011) naires not only would capture health care issues from the perspective of the parent consumer, but could also A Radical Idea: Private Funding to serve as a basis on which to translate complex social sci- Encourage Innovation Within State ence data into actionable information that policymak- Medicaid Agencies ers could appreciate. For instance, data emerging from In the early 1990s, public attention to emerging scien- the surveys indicated that indigent mothers were more tific evidence about brain development had facilitated likely to suffer from depression, a known risk factor for the development of the Healthy Steps initiative. In the developmental problems in children. Also, the Survey of late 1990s, a second new policy window appeared. In Parents with Young Children revealed that while breast- the most significant change to health and social welfare feeding rates were lower among poor mothers, they policy since the 1960s, reformers called successfully for could be raised by timely counseling from a physician or devolution of power from the federal government to nurse. Even “simple” recommendations from clinicians state authorities. In 1996, President Bill Clinton signed to parents about practices to promote their children’s two pieces of legislation that radically reshaped the brain development—for instance, that they could help social safety net for children and families. The Personal their children by reading to them—worked. Responsibility and Work Opportunity Reconciliation By 1998, The Commonwealth Fund team Act of 1996 terminated the open-ended federal com- included senior vice president Brian mitment to ongoing financial assistance for poor fami- Biles, M.D., M.P.H., the former staff lies, while Title XXI of the Social Security Act, known director of the Subcommittee on as the State Children’s Health Insurance Plan (SCHIP), Health of the House Ways and Means created a new $20 billion funding stream designed to Committee, and Melinda K. Abrams, expand access to health insurance for indigent young- M.S., a recent graduate in health care sters whose families did not qualify for Medicaid.51 policy from the Harvard School of Before 1997, Medicaid paid for half of all Public Health. Along with Patricia Melinda K. health care delivered to infants and for almost one-third A. Riley, executive director of the Abrams, M.S., vice president, of care for children ages 1 to 5. SCHIP now added National Academy for State Health Patient-Centered Coordinated Care more children to the rolls of publicly funded insurance www.commonwealthfund.org 19 Policy (NASHP), they developed an implementation behaviors and to design public policy. Some questioned strategy for an intriguing idea. the wisdom of a foundation providing a grant to a NASHP, a voluntary group, had been founded government agency. A number of issues needed to be in the late 1980s by health policy leaders seeking a vehi- considered. If the grantee were a government agency cle to share policy challenges and best practices across rather than an individual researcher or community pro- states. The NASHP and Commonwealth Fund working gram, could it, for example, be held accountable in the group considered states an untapped resource, believ- same way? Moreover, how much money was needed to ing that if their Medicaid agencies were given the right make a difference and seed innovation? Was $100,000 sets of tools, they could create sustainable new models enough? Too much? Others worried that states would for developmental health care services to children. They use Fund monies as a substitute for federal revenue, thus thought that improved access to care, increased rates diverting existing resources to ends other than improve- of screening and referral, and better integration of care ment of child health care. In order to prevent such an could be achieved cost-effectively at the state level given outcome and maximize the likelihood of success, The the right support systems and the freedom of each state Commonwealth Fund invited NASHP, as experts in to tailor its programs to its own needs. state-level policy, to choose four demonstration states to Their idea resulted in the Assuring Better receive three-year grants.53 Child Health and Development (ABCD) initiative. It One of the first tasks before launching the aimed to build on Healthy Steps but in a more targeted ABCD program was to draft a uniform definition of way by focusing on poor children. By now, as was clear “developmental care.” What did this concept really from the evidence, indigent youngsters suffered from mean? For this effort the team turned again to Neal overwhelmingly high rates of preventable growth and Halfon, M.D., M.P.H., as well as to developmental developmental problems, and early intervention stood pediatrician Michael Regalado, M.D. The definition to benefit them financially in the form of fewer health Halfon and Regalado proposed was quickly adopted for expenditures and enhanced economic well-being in the the ABCD initiative. It included clinical assessment, future. The Commonwealth Fund and NASHP group follow-up surveillance, screening and referral, develop- recognized that while Medicaid had improved access to mental health promotion and intervention, coordination disease-based care for children, its potential to enhance of care, and ongoing monitoring of all these functions.54 screening and developmental care was not being fully Before now, developmental screening had usu- realized. It was decided to fund this initiative through ally been bundled with other well-child services such as Medicaid. immunizations; one of the challenges of the study was The ABCD team sought to build on the les- therefore to break it out discretely in order to quantify sons learned from Healthy Steps. Bringing payers in its availability. Another challenge would be to engineer early in the process facilitated an ongoing dialogue reimbursement for care that many clinicians assumed between clinicians and state Medicaid officials in ways was not covered. One thing that would help in this that stood to improve the chances of sustainability. The regard was the existing EPSDT mandate stipulating approach being developed by the Fund was not, how- that states screen indigent children for developmental ever, without risk, not least because there was little in conditions. The team also reasoned that if ABCD were the way of precedent. The idea of private funding for structured in a way that quantified the quality of devel- state Medicaid agencies was not just novel; for some, opmental services and their outcomes, Medicaid would it was revolutionary. In the past, state Medicaid agen- be more likely to reimburse for those services.55 cies had contracted with managed care organizations to The ABCD planning strategy sought to build oversee care; the new model would ask them to engage on data emerging from Healthy Steps regarding the more directly with practitioners both to change practice importance of developmental screening and early referral. In addition to revealing the importance of 20 A HISTORY OF THE COMMONWEALTH FUND’S CHILD DEVELOPMENT AND PREVENTIVE CARE PROGRAM collaboration between providers and payers, and paying Steps initiative, a monitoring and assessment process attention to payment and sustainability from the begin- for ABCD was embedded in the program design. This ning, Healthy Steps had demonstrated the benefits evaluation, though modest, led to the use of comparable of targeting poor children. The initiative also capital- measures by participating states, and eventually contrib- ized on events such as two White House conferences uted to advancements in the measurement of develop- on child health in the late 1990s that spotlighted the ment screening and care coordination. ongoing accretion of scientific evidence revealing the A number of thought leaders in children’s importance of early brain development to subsequent health care were asked to provide consultation in the health and well-being and the opportunities offered by early phase of ABCD (which later became known as early-intervention programs that enabled early identi- ABCD I). Pediatrician Neal Halfon, M.D., M.P.H., fication of developmental risks. The Fund’s attention to had been addressing the state of pediatric develop- the quality of children’s health services also coincided mental science and convened an advisory group to with that of other voluntary initiatives now under provide ongoing guidance and technical support for way nationwide. The Child and Adolescent Health ABCD. Sara Rosenbaum, J.D., of George Washington Measurement Initiative (CAHMI) aimed to develop University, provided policy analysis to help state meaningful measures for assessing the quality of pedi- Medicaid agencies better understand how to leverage atric health care. Another organization, the National the resources available to them through statutes such Institute for Children’s Healthcare Quality (NICHQ), as EPSDT and how best to draw on them to advance began instituting collaborative learning aimed at quality ABCD. Christina Bethell, Ph.D., of the Foundation for improvement. Accountability (FACCT), created a variety of measures, The pilot states would be required to create among them the Promoting Healthy Development models that promoted the provision of quality child Survey, to help state Medicaid managed-care organi- development services (screening, surveillance, and zations collect and interpret the wealth of data to be referral) for all Medicaid-eligible children from birth generated in the ABCD states. Bethell also developed through the age of three years; identification of family tools aimed at evaluating health system performance in risk factors likely to impede children’s healthy develop- providing quality education to parents regarding their ment; and policies and programs to ensure that pediat- children’s growth and development, identifying the ric providers and health plans would have the necessary barriers that needed to be overcome in order to bridge knowledge and skills to furnish those services. It was the gap between guidelines and practice, and tracking critically important that states receiving ABCD funds what parents thought about the services their children would be able to match these private Commonwealth received.56 Fund dollars with federal Medicaid dollars. NASHP selected the states of Utah, Vermont, But the states would be given flexibility to North Carolina, and Washington to participate in develop financing models that worked for them indi- ABCD. All were judged to have stable, committed vidually. They were also encouraged to be creative, state Medicaid staffs, and their grant applications to experiment, and to take informed risks. And they had all revealed strong statewide collaboration. Each would be required to share information with one had provided a detailed outcome plan and thoughtful another about what worked, and what did not. As mechanisms to promote sustainable practice and policy such, each state needed to commit to participating in changes. North Carolina, for example, outlined the a cross-state learning consortium, or “think tank,” that way in which its innovative statewide pilot program, Commonwealth Fund and NASHP leaders believed Community Care of North Carolina (CCNC), with its would seed innovation, replication, and the spread system of data-based case management, would provide of best practices and new ideas. As with the Healthy www.commonwealthfund.org 21 a sturdy template on which to layer ABCD-related that mandated screening as part of an EPSDT visit, a initiatives.57 change that saved clinicians considerable time. Almost immediately, all four states crafted At the beginning, Earls and her team used improvement models that enhanced developmental ABCD as a quality-improvement pilot for a single net- screening rates and clarified Medicaid policies and pro- work of practices, but within two years its procedures cedures, changes that stood the test of time (see box for were being applied across the entire state. Systematized a full summary). No state was more enthusiastic about screening with follow-up interventions and close coor- ABCD than North Carolina.58 Developmental pediatri- dination with managed care organizations improved cian Marian Earls, M.D., F.A.A.P., medical director of physician satisfaction almost immediately. The intel- Guilford Child Health (GCH) Inc., a large pediatric lectual and technical resources provided through the safety-net practice in Greensboro, saw the combination program led to work-flow mapping that identified for of ABCD and CCNC as creating a “perfect” opportu- individual practices the most effective and replicable nity that would allow her to achieve her long-standing ways to integrate developmental screening and surveil- goal of improving developmental services and well- lance into primary care. The need for more practice- child care for children in North Carolina.59 level standardization quickly became clear, and a propri- Most of the children in Earls’ practice were etary developmental screening instrument, the Ages and poor, as were 44 percent of North Carolina’s children. Stages Questionnaire (ASQ), became integrated into The North Carolina ABCD group quickly realized primary care practices across the state.61 that the program’s resources brought people together A major advantage of ASQ was that it was a to talk with one another as they had never been able to validated instrument that could be reliably completed in the past, and in ways that made change possible. For by parents based on their home observations of their example, up to now the lack of clarity in EPSDT lan- child. Earls had long considered screening processes guage had left practices, and sometimes individual care based only on in-office observations made by clini- providers, to interpret the concept of “developmental cians to be invalid, because children behave differently screening” for themselves. Reimbursement forms were away from their home surroundings. In addition to the unwieldy and confusing.60 With the support and infra- better assessment outcome, the ASQ model greatly structure provided by ABCD, payers (state Medicaid increased parents’ satisfaction with their children’s pri- agencies) and physicians could now together develop mary care provider. The parent-completed tools, which standardized definitions and streamlined processes were inexpensive and required little staff time, engaged parents directly in their children’s care and opened up EXHIBIT 1. ENDURING CHANGES OF ABCD I STATES State Lasting Improvement Community Care of North Carolina’s developmental screening practices have North Carolina spread to all 14 networks across the state. The state requires standardized developmental screening, but the service is not reimbursed. The state has maintained its pre-natal-5 nurse home visiting program for Utah children at risk of developmental delay. Healthy Babies, Kids, and Families home visiting program was expanded across Vermont the state as part of children’s integrated services. The state also reimburses for standardized development screening, though it is not required. State continues to use EPSDT forms developed during ABCD I to facilitate structured developmental surveillance. State requires providers that offer Washington screening for children in foster care to use the forms and pay an enhanced fee for the screens. 22 A HISTORY OF THE COMMONWEALTH FUND’S CHILD DEVELOPMENT AND PREVENTIVE CARE PROGRAM new lines of communication between care providers and 2. Articulate the evidence base for the efficiency and parents. The improvements in screening rates in North effectiveness of preventive and developmental Carolina were astounding. When ABCD was launched services. in the state in 2000, 15 percent of eligible children were 3. Complete the evaluation of the Healthy Steps and receiving EPSDT screening by the age of two years. By ABCD initiatives. 2001, screening rates for those children in the ABCD 4. Extend the work of the ABCD initiative to more pilot practices were greater than 70 percent.62 states. As a result of the ABCD and CCNC effort, physicians, in partnership with state agencies, amended 5. Identify federal and state policy options for state Medicaid policies for North Carolina. The new promoting the universal incorporation of preventive rules mandated the use of a standardized, validated and developmental services into pediatric practice. tool for developmental screening at specified intervals. 6. Expand parents’ and clinicians’ access to reliable Within a short time, more than 90 percent of primary information on child development through the use care facilities serving Medicaid-eligible children had of information technology.67 integrated developmental and behavioral screening into practice.63 Evaluations of ABCD I categorized At this juncture, the Fund began looking for a it as a successful collaboration among Medicaid and director for the new program. Throughout the search, other state agencies, noting that “interagency barriers Melinda Abrams managed the child health portfolio were broken down and often intractable bureaucracies while continuing to bear primary responsibility for the changed their behaviors.”64 ABCD initiative. Abrams’ experiences before graduate school as a community organizer had convinced her of Setting the Stage: A New Partnership the importance of combining a “top down” approach for a New Program (such as enacting new federal policies) with a “bottom In 2001, the Institute of Medicine released a landmark up” strategy that engaged those “on the ground” to effect report calling for a redesign of the American health care social change. She believed strongly in a problem-solv- system to improve the quality of care through evidence- ing approach that identified a problem and, often, the based practice, and to identify those gaps in services seemingly intractable barriers to addressing it, but also that precluded the provision of first-rate health care to believed in the importance of generating the evidence all Americans.65 That same year, the AAP issued new necessary to craft a meaningful solution.68 health supervision guidelines that maintained the focus Edward L. Schor, M.D., on developmental services by calling for the integration a member of the ABCD Advisory of health, educational, and social variables through- Committee and a nationally out children’s programs.66 And, in July 2001, The respected leader in the field of pedi- Commonwealth Fund’s board decided to bring all of its atrics, was chosen to take over direc- child development activities under the single program- tion of the CDPC program and matic umbrella of the new Child Development and Abrams’ efforts with ABCD in 2002. Preventive Care (CDPC) initiative. With a dedicated Schor was trained in general pediat- Edward L. Schor, annual budget of nearly $2 million, the CDPC program M.D., former vice rics and behavioral sciences and had president, State would support projects to: Health Policy and a long-standing interest in the psy- Practices chosocial and economic variables that 1. Develop state-of-the-art, evidence-based shaped how child health care was curriculums for pediatric residency training in delivered in the United States. As a resident in training early child development. in the 1970s, he had realized that he was “learning a www.commonwealthfund.org 23 great deal about children’s diseases, but not as much as I immunization is more remarkable for its limitations wished to learn about children.” He believed strongly in rather than its findings.”71 In other words, while most community-oriented primary care with a strong devel- people would consider that well-child care provided a opmental focus.69 Schor had been a program officer for social benefit, there was little evidence at the level of the Kaiser Family Foundation, had served as medical individual child outcomes to support the claim of a sig- director for family and community health and director nificant return on such a major investment of resources. of health policy in Iowa’s Department of Public health, Schor’s and Abrams’ strengths complemented had directed a pediatric residency program, had done each other unusually well. Although both were passion- research on the family context of child health, and as a ate and informed about children’s health care and com- medical director for a managed care organization had mitted to data-driven change, Schor brought a vision coordinated health care services for children in foster grounded in his many years of clinical and policy expe- care. His new role brought together the many strands of rience, while Abrams possessed the ability to take big his career. ideas and turn them into action, in part by effectively Like Abrams, Schor wanted to capitalize on the creating partnerships between the Fund and grantees, growing quality-improvement movement and the trend as well as other influential stakeholders.72 By summer toward evidence-based medicine. He was well aware 2002, they and their Fund colleagues had a broad out- that the effectiveness of pediatric preventive services line in place for infusing developmental services into was difficult to “prove” scientifically. The EPSDT legis- well-child care in a structured, sequential, and standard- lation had improved access to care, but in Schor’s view ized fashion. First, they had aggregated all of the avail- it remained “a wish unfulfilled” because the law lacked able data about developmental screening. Then they specificity. Developmental screening, for example, could planned to structure funding for diagnostic tools and be, and often was, interpreted differently by clinicians. best practices; tracking systems to identify successes and For some, it included a formal developmental assess- failures; apparatuses for the dissemination of data and ment. For others, it meant a summary of the clinician’s new practices; and support of leading pediatric consul- overall impression captured through a routine well- tants and other stakeholders.73 child visit. In October 2002, Schor convened a panel of Nevertheless, Schor wanted to use EPSDT’s seven of the nation’s leading pediatricians to review the mandate to fund “medically necessary” developmental work so far and make recommendations for moving services for very young children as the basis for orga- forward. The group endorsed Schor’s approach, agreeing nizing the new program’s goals. He also argued that that child development care should be better anchored in order for the CDPC program to make real change, within the well-child care framework, that low-income it needed to be more than just an assemblage of good children should be targeted because they were the most ideas and demonstrations: it must push the horizons at risk, and that better measures to assess development of research, identify concrete program targets, and nest were a key to building professional support. The group them in existing funding streams.70 agreed with Schor that the Fund needed a clear strat- Schor also wanted to engage the research, egy to achieve more than just further documentation of practice, and policy initiatives undertaken through the the problem and an intellectual argument for change. CDPC program, envisioning it as an opportunity to One panel member, Julius Richmond, M.D., a former address the long-standing policy challenge of quantify- surgeon general, defined the problem forcefully and ing the benefits of well-child care. In 1988, the Office eloquently: “The landscape is littered with reports. …A of Technology Assessment, the scientific advisory body report isn’t enough, we have to have a social strategy of to Congress, had concluded that “evidence on the effec- how we get there from here.”74 tiveness of components of well-child care other than 24 A HISTORY OF THE COMMONWEALTH FUND’S CHILD DEVELOPMENT AND PREVENTIVE CARE PROGRAM In another contribution to the meeting, Paul the Gerber Foundation, and Neal Halfon’s Center Dworkin, M.D., professor and chairman of pediatrics at for Healthier Children, Families & Communities, at the University of Connecticut School of Medicine and UCLA. The matrix of intersecting tools that Abrams, physician-in-chief of Connecticut Children’s Medical Schor, and the ABCD Advisory Board had wanted to Center, described his innovative care coordination develop was becoming a reality. The National Survey of model, ChildServ. Dworkin created the program in Early Child Health, for example, was strengthened by 1998 in Hartford, Connecticut, a city whose 41 percent adapting several of Christina Bethell’s Commonwealth child poverty rate placed an overwhelming number of Fund–supported Promoting Healthy Development children at high risk of serious developmental problems. Survey (PHDS) topics for inclusion in the new survey. Dworkin’s research suggested that 25 percent to 30 Like the Survey of Parents with Young Children, the percent of Hartford’s kindergarten students lacked the National Survey of Early Child Health revealed that emotional, behavioral, and/or developmental resources many parents wanted more information about child- to succeed in the first grade. rearing, as well as about growth and development. The Dworkin had long believed that developmental new survey spotlighted once again the great variability screening was largely overlooked in American pediatric in the quality and quantity of developmental services medical education and, consequently, undervalued in available to families.77 clinical practice. Dworkin’s work through ChildServ Later that year, Schor published a landmark revealed that it often took three to four office visits and article in Pediatrics. The paper, “Rethinking Well-Child 12 to 13 telephone calls to connect parents with devel- Care,” summarized his many years of thinking about opmental resources, if the resources even existed. He the subject. Schor reminded his fellow pediatricians of designed ChildServ to identify the services available in several facts: existing policies and practices had failed the community, to provide an organized referral system, to generate universal access to developmental services and to track children in a streamlined fashion.75 Thanks for children; the widely accepted periodicity schedule, to ChildServ, when a clinician caring for a Medicaid- which guided payment by Medicaid and other insur- insured child suspected a developmental problem, he ers, remained driven by the timing of immunizations; or she could call a care coordinator at a toll-free tele- and the nascent but growing movement in support of phone number. After the provider and the coordina- evidence-based preventive guidelines, such as those rec- tor together identified appropriate services from the ommended by the U.S. Preventive Services Task Force, ChildServ inventory, the care coordinator facilitated measured interventions only in terms of morbidity and referrals to those services. Families themselves could mortality reduction. Clearly, pediatric clinicians had a also contact ChildServ directly to be linked to services. lot of work ahead of them if they were to generate an A major strength of ChildServ was that it used existing evidentiary basis for well-child care. The article had a resources such as Title V and Part C. With new fund- strong impact, stimulating a number of follow-up letters ing from CDPC, ChildServ evolved into the “Help and discussions around the country, and was cited by Me Grow” initiative. Fund support not only helped other scholars in medical journals more than 40 times Dworkin to link to NASHP, NICHQ, and the ABCD in the next few years.78 program, it provided resources for him to create a dis- Schor’s article, together with early Fund grants semination strategy that could be adapted by other to Bethell, Dworkin, and the research center Child states.76 Trends, helped to synthesize the extant data about child In June 2004, the journal Pediatrics published a development, to identify key gaps in knowledge, and supplemental issue focused on an analysis and discus- to set examples of best practices that could be adapted sion of results from the 2000 NSECH, developed with for national use. In the excitement surrounding ABCD support from The Commonwealth Fund, the AAP, I, it and other projects addressing child development www.commonwealthfund.org 25 “primed the pump” for more knowledge generation, and attracted a new level of attention to the field of devel- opmental screening. So did the publication in 2004 of a new study sponsored by the Institute of Medicine. The report, titled Children’s Health, the Nation’s Wealth, updated the discussion begun in the 1990s regard- ing early brain development and the importance of a national commitment of resources to youngsters in early childhood. The IOM report was peppered with infor- mation from Commonwealth Fund–supported research projects, a reflection of the growing visibility of the CDPC program.79 26 A HISTORY OF THE COMMONWEALTH FUND’S CHILD DEVELOPMENT AND PREVENTIVE CARE PROGRAM PART III. RETHINKING WELL- screening and mental health promotion for very young children. CHILD CARE: HOW THE ABCD II was launched in January 2004. COMMONWEALTH FUND Central to the ABCD model was its flexibility in per- PROVIDED THE TOOLS FOR mitting each state to define its own approach based on CHANGE its own needs. Illinois, for example, wanted to improve Medicaid reimbursement for developmental screening What is the role of the primary health care as well as to promote maternal depression screening. In system in promoting children’s development, its applications, California’s Medicaid officials proposed and how can we promote its effectiveness?80 to convene a statewide working group to develop new —Edward L. Schor, M.D. (2002) policy with managed care programs in two counties, as the first stage in making policy changes statewide.82 Program staff and NASHP incorporated into A Foundation for Change ABCD II the key strategies that had worked well in The ABCD program had built tremendous momentum ABCD I: planning for dissemination early on; put- for positive change; an evaluation of its efforts would ting in place strong advisory committees; supplying laud it for the fact that “interagency barriers were bro- technical assistance; and requiring states to match ken down and often intractable bureaucracies changed grant funds. Neva Kaye, the NASHP senior program their behaviors.”81 Looking forward, Commonwealth director responsible for ABCD, had realized by now Fund staff wanted to develop a new initiative to pur- that the shared learning consortium was the program’s sue three areas that both Healthy Steps and ABCD single greatest strength. The learning collaborative had shown to be of major importance: developmental created an intellectual space to bring together profes- screening, quality improvement, and care coordination. sionals who had not previously had a forum for interac- ABCD II would be the laboratory to test tion—Medicaid directors, academic researchers, and further initiatives in these areas. But while the states clinical practitioners now had the time and place to would still have extensive freedom to individualize their discuss issues in depth and to agree together on taking efforts, ABCD II was designed to be less exploratory informed risks. This interaction not only built goodwill, than ABCD I had been. Abrams, who led ABCD II, it forged practical solutions.83 wanted a more specific focus on developmental screen- In the years 2004 to 2011, Fund grantees stud- ing, a direct outcome of North Carolina’s ABCD I ied strategies for improving screening, quality of care, successes. The number of applicant states suggested and care coordination; for integrating these advances that the Fund’s ABCD initiative was finding a recep- into mainstream clinical practice; for disseminating tive audience. Twenty-five states applied for three- them statewide; and for anchoring them in sustainable year ABCD II grants, and California, Illinois, Iowa, policy. The Fund’s approach was targeted and strategic, Minnesota, and Utah were selected to participate. with a funding strategy that maintained an iterative, Clearly, the answer to the question raised at the begin- ongoing relationship between itself, its grantees, and ning of the ABCD project as to whether a relatively the entire CDPC grant portfolio. Abrams, for example, modest grant to states of less than $100,000 could went on regular site visits, reminding grantees and make a difference was a resounding yes. And, like the NASHP of the “big picture” by keeping them apprised model states for ABCD I, these applicants had strong of other CDPC and Fund initiatives germane to state leadership already guiding their Medicaid and ABCD. SCHIP child health programs. Moreover, their propos- The Fund decided to start with screening for als included ambitious, yet clearly defined, strategies to a number of reasons. As a pediatrician, Schor knew address problems related to providing developmental www.commonwealthfund.org 27 that identification of a problem through screening was Regalado’s work consolidated all the available informa- one of the first steps in a clinician’s thought process. tion and provided a typology of developmental services Most pediatric health care providers were already doing that was used in developing the CDPC program. He some kind of screening, but usually it was a subjec- ran focus groups with pediatricians and found them tive appraisal that entailed observing the child and to be very interested in providing more child-rearing asking the parent a few questions, rather than draw- guidance to parents, while at the same time they felt ing on a standardized instrument. Screening was also that they faced numerous barriers to doing so, among a logical place to start because Schor knew it would them inadequate training, time constraints, and lack of be important to parents whose top priority for a well- knowledge regarding community resources.87 child visit was to learn how their child was progressing In the course of cataloguing the available devel- developmentally. Moreover, compared to other types of opmental screening instruments, Case Western Reserve practice changes, introducing a simple screening instru- psychologist Dennis Drotar, Ph.D., also documented ment was relatively concrete. Schor hoped that once a the lack of consensus in clinical practice regarding practice figured out how to collect developmental data what the best tools were, and a dearth in the literature in a standardized fashion, it could more easily adopt regarding their validity.88 Another pediatrician, Laura data-gathering devices for other issues, such as maternal Sices, M.D., reviewed the research on developmental depression screening.84 screening. While her study showed that there was very little research into its impact, there was empirical evi- Developmental Screening dence to be found for its benefits: in those states that Clinical practice is nested in a professional context that did little screening or did not make screening uniformly requires a defined body of knowledge and a trained available, there was a higher incidence of developmental pool of individuals authorized to do the work. The problems in children.89 CDPC generated information valuable for guiding Models. Program staff challenged investigators practice, but it went beyond that to help expand the to think big. While attending a conference on health specialty of developmental and behavioral pediatrics care quality in 2003, for example, Schor asked David for the 21st century.85 The infusion of resources helped Bergman, M.D., of Stanford University the question shift the focus of well-child care toward developmental that he put to many of his grantees: “What would a service, and also forged a better understanding among ‘perfect well-child care’ system look like?” He did so to developmental-behavioral pediatricians regarding how capture their imaginations and challenge their inven- they could promote the inclusion of appropriate devel- tiveness, even as he asked them to undertake a definable opmental services, such as screening, in primary care project with tangible outcomes. Bergman’s project pro- practice and training.86 duced a practical, authoritative physician guide to best Mapping the Literature. The program’s team office practices in well-child care, including research- funded a number of projects that aimed to identify based, technology-driven strategies to achieve them. barriers to screening, to develop screening tools, to Bergman articulated and promoted the idea of “tiered publicize examples of best practices, and to embed care,” that is, of providing pediatric primary care visits developmental screening in standards maintained by the that varied in frequency, length, and scope, based on a AAP and other professional organizations. One such needs assessment.90 project was headed by Michael Regalado, M.D., direc- Bergman and his colleagues consolidated tor of developmental pediatrics at Cedars Sinai Medical information on the latest health care innovations and Center in Los Angeles, who mapped the extant lit- consulted with pediatric experts to generate the blue- erature in order to define and examine the evidence print for a continuum of primary care services. The base supporting the value of developmental services. resulting guide was widely disseminated by the Fund to 28 A HISTORY OF THE COMMONWEALTH FUND’S CHILD DEVELOPMENT AND PREVENTIVE CARE PROGRAM pediatric practices through AAP and NICHQ meetings provided assistance to individuals trying to harness the and publications.91 After a Fund-sponsored conference Internet in novel ways, funding Henry Shapiro, M.D., suggested broad support for the tiered-care concept, of All Children’s Hospital in St. Petersburg, Florida, to Bergman and his colleague Arne Beck received funding enable him to turn his electronic resource on growth to implement the model. Children in Colorado Kaiser and development into a substantial tool for pediatri- and Denver Health plans were tracked into one of four cians and parents. The site ultimately became a perma- periodicity schedules on a continuum from low risk to nent responsibility of the Section of Developmental and high risk. Risk assessment was based on a number of Behavioral Pediatrics of the AAP and took up its home factors, among them a Web-based form that parents on AAP’s website.96 completed prior to their child’s visit.92 In 2007, the ABCD Screening Academy was The CDPC funded subsequent projects launched to spread the best practices, experiences, and related to the idea of tiered or individualized well-child successes of the original eight ABCD states to more care. In 2005, J. Lane Tanner, M.D., of the Children’s than 20 other states and U.S. territories. The Screening Hospital and Medical Center in Oakland, California, Academy was a 15-month project for which states Martin T. Stein, M.D., of Rady Children’s Hospital at received no money except funding to attend a confer- UCSD, and Lynn M. Olson, Ph.D., at the American ence run by NASHP and to participate in an ongoing Academy of Pediatrics, documented the importance of network of webinars. Unlike the two ABCD phases, well-child care to pediatricians and parents, suggesting which had each included a small number of states and ways of how practice might be redirected to support a required three years of involvement, the aim of the greater focus on child development.93 Another grant, Screening Academy was to efficiently engage as many to Children’s Hospital of Philadelphia pediatrician new states as possible in promoting structured develop- Christopher Forrest, M.D., Ph.D., and Susmita Pati, mental screening. The ABCD I and II states, NASHP, M.D., M.P.H., of Stony Brook University, analyzed and the Fund had learned a great deal regarding how how to use risk factors to tier care. This project not best to engage Medicaid and other state agencies. A only revealed the impracticality of a one-size-fits-all major goal of the Screening Academy was to spread approach to well-child care, it also was an early example that information, as well as state success stories such as of the potential use of electronic data-gathering in Earls’ in North Carolina and Dworkin’s in Connecticut, health care delivery and quality improvement.94 beyond the eight participating states. This low-cost Diffusion/Dissemination. Fund-sponsored semi- dissemination strategy worked very well. Every state nars such as workshops at the annual meetings of the improved its tracking of children receiving developmen- Society for Developmental and Behavioral Pediatrics tal screening and made meaningful changes to policies helped to spark interest in and enhance knowledge and procedures that resulted in improved quality and about promoting developmental screening by general reduced costs. By 2009, the Screening Academy states pediatricians. Interest proved strong: the sessions were were reporting significant improvements in rates of filled every year. The CDPC team also recognized the developmental screening. Changes to Medicaid pro- importance of leveraging connections with the AAP. In gram provider manuals and websites clarified expecta- 2004, as part of the implementation of Bright Futures, tions regarding structured developmental screening, it provided a large grant to the AAP to test devel- while new requirements mandated standardized devel- opmental screening and other practice changes in a opmental screening as part of EPSDT visits. Provider number of pediatric practices.95 Capitalizing on North education and revised claims-processing systems also Carolina’s success in ABCD I, the Fund also supported improved rates of screening. This broad stakeholder Marian Earls in bringing her expertise to states who engagement represented an innovative and inexpensive were already contacting her for advice. Finally, they www.commonwealthfund.org 29 spread strategy; in every instance, changes were made academicians such as Arvin Garg, Susmita Pati, and without the need for new funding or legislation.97 Laura Sices, helped to expand the field by strengthening In addition to providing tools and ideas to their potential to get large federal research grants.98 policymakers, administrators, and clinicians at the The CDPC team also funded Arizona State state level, the Fund maintained a great interest both University’s Bernadette Melnyk, Ph.D., R.N., a leading in supporting young, promising investigators and in nurse researcher in child mental health. Her project was training the next generation of pediatric health care designed to study ways of revising the ambulatory pedi- professionals. Karen Davis was especially committed to atric nurse practitioner (PNP) curriculum to strengthen these areas. Few academicians studied the care deliv- its behavioral and developmental components. Just ery system as it related to well-child care. In an effort as with physician training, national surveys of PNP to create a cadre of investigators whose careers might programs indicated that knowledge and skills require- focus on preventive care, Schor asked the Academic ments for treating psychosocial and behavioral health Pediatric Association to run a small-grant program for issues varied widely, and that screening tools and early junior investigators. By 2011, the initiative had funded evidence-based interventions for these problems did not 12 young investigators. The small-grant program was have any definite place in the curriculums. Educating so appealing that, shortly after its initiation, the federal faculty and furnishing teaching resources could increase government’s Maternal and Child Health Bureau chose teaching time and provide students with organized, to support a sister program, the Bright Futures Young in-depth knowledge about development and screening Investigator project, which focused more broadly on methods.99 preventive care. These funding streams, as well as the Changes to Screening Rates and Standards for CDPC program’s commitment to funding early career Screening in the U.S. ABCD I had identified barriers to EXHIBIT 2. MEDICAID-ABCD POLICY CHANGES: 32 STATES PROMOTE STANDARDIZED DEVELOPMENTAL SCREENING AK WA ME MT ND OR MN VT NH ID NY MA SD WI WY MI CT RI IA PA NJ NV NE OH MD DE UT IL IN CA CO WV KS VA MO KY NC TN AZ OK NM AR SC AL GA MS HI TX LA SDS required and reimbursed (n=8) FL SDS required, but not reimbursed (n=6) SDS not required, but reimbursed (n=18) No policy changes (n=18) 30 A HISTORY OF THE COMMONWEALTH FUND’S CHILD DEVELOPMENT AND PREVENTIVE CARE PROGRAM developmental screening such as nonreimbursement. relieving the fears of many physicians that mothers But the Fund also plumbed existing statutes under would resist being screened for depression.101 which new efforts to enhance developmental screen- These ABCD state efforts made a difference. ing might fit. The Fund’s study group brought together Research by CAHMI revealed that children with public two skilled policy entrepreneurs: Kay Johnson, M.P.H., insurance were more likely to receive developmental M.Ed., a nationally known leader in Medicaid and chil- screening than uninsured children or even those with dren’s health policy; and Sara Rosenbaum, Harold and health insurance. In addition to the improved rates of Jane Hirsh Professor of Health Law and Policy at the screening seen in the ABCD states for Medicaid fami- George Washington University School of Public Health lies, by 2011 private insurers in Alabama, Rhode Island, and Health Services. Johnson and Rosenbaum studied Texas, and Massachusetts had added coverage for ways of maximizing the potential of Medicaid, EPSDT, developmental screening to their benefit plans. Large CHIP, and other programs to deliver a full range of pre- national insurers such as United Health Care, Aetna, ventive care and developmental services to young chil- CIGNA, and HealthNet also began to pay for screen- dren. Their efforts were very useful to the ABCD work ing under their standard benefit plans. Indirect evidence groups in rethinking policies and procedures.100 of the positive results of ABCD and CDPC efforts The Fund-sponsored screening-related initia- was found in the 22 percent increase between 2003 and tives resulted in a number of changes. All five of the 2010 in the proportion of children from birth through ABCD II states were able to show that health care pro- age three who were served by state early-intervention viders could be reimbursed through Medicaid for con- (Part C) programs. This figure meant that, in 2010 ducting developmental screening. The intensive work versus 2003, 68,911 more children in the United States of the ABCD II states resulted in increases in screening were receiving services designed to minimize the impact rates to 43 percent to 95 percent, depending on the of a recognized disability.102 state, with all but one state reporting total screening Among health care providers, not only did the rates of about 75 percent. CDPC-funded initiatives challenge the beliefs of many The ABCD II program validated the impor- that screening was nonreimbursable and extremely tance of assessing parents’ mental health, while also time-consuming, they also succeeded in making their providing assessment tools and reimbursement strate- changes sustainable by embedding their findings in gies. The technical assistance, learning consortium, recognized professional standards for well-child care and consultation provided by NASHP and the Fund programs such as Bright Futures. The grant to the AAP encouraged the ABCD II state Illinois, for example, to in 2004, for example, engaged it in the Fund’s work identify a way to pay for maternal depression screen- and led to enhancements of the screening provisions ing through Medicaid. As a result of the state’s par- of Bright Futures while simultaneously prompting the ticipation in ABCD II, depression screening through AAP and a cohort of others to act as champions for Medicaid resulted in a 96 percent increase in paid developmental screening around the country.103 claims for the condition. Parents’ mental health was one Changes to AAP screening statements in the area where the keen synergy between support-oriented years 2001–2010 reflected the growing sophistica- ABCD and research-oriented CDPC was clearest. For tion of new professional standards for developmental example, CDPC grant recipient Ardis Olson, M.D., screening. The 2001 statement had simply provided of Dartmouth College developed a model that dem- a list of recommendations and advocated the use of onstrated that maternal depression screening could be standardized screening tools. The 2006 policy state- feasibly made a routine part of well-child care visits, and ment called for more screening uniformity, crediting the could be reimbursed in that context. She also showed CDPC program for providing the evidence to support that patients would accept such routine screening, this change. In 2008, the AAP’s new well-child care www.commonwealthfund.org 31 standards emphasized child development more heavily children at the individual level. The RCT worked well than in the past, again acknowledging CDPC’s leader- for risk-benefit analyses of therapeutics for ill children, ship. Comparing the policy statement of 2010, the most and it was a powerful tool for assessing the worth of recent, with that of 2001, there is not only much more one drug over another. However, it did not work for detail and nuance in the organization’s recommenda- designing evidence-based well-child care because it was tions, there is a sophisticated synthesis of the growing intended to study therapeutic interventions in ill chil- body of evidence, along with an algorithm, strategies, dren. Interventions proposed for pediatric primary care and critiques of the tools available to guide clinicians.104 required an assessment model designed to study health By 2009, the pediatric community was pay- promotion in well children situated in their normal ing new attention to well-child care and its compo- home, community, and societal settings. nents. For example, Lewis R. First, M.D., the editor Sege stated that it was both unfeasible and of Pediatrics, took note of a Fund-sponsored national unethical to deprive children and their parents of edu- survey of pediatricians in a blog entry titled “How cation, screening, and anticipatory guidance merely Well Are Our Well-Child Care Visits?” The survey because the value thereof could not be captured by the had found a substantial increase in the proportion of RCT. It would be even less justifiable to deliberately pediatricians who reported regularly screening young impoverish them in order to submit these variables to children using a structured screening instrument. A research testing. He identified a hidden bias in policy comparison of pediatricians’ use of standardized devel- formulation arising from the illness-oriented RCT opmental screening tools for the years 2002–2009 approach. The traditional model should be mitigated found that the percentage who did use them had more by the use of alternative approaches for obtaining and than doubled.105 evaluating evidence scientifically. Sege’s Commonwealth By now, significant advances had been made Fund–supported work alerted pediatric health care in the quality and quantity of developmental screen- providers to the risk of relying on a too-narrow defini- ing, and the CDPC program had accreted evidence, tion of “evidence,” and warned them against adopting strategies, and tools confirming its importance to chil- any particular method as the sole measure of “quality,” dren’s well-being. But the Fund and other stakehold- a concept of growing importance in early 21st-century ers saw the need for an even broader discussion about health care in the United States.106 the ways in which well-child care was viewed in the United States, one that would fully recognize Jacobi’s Quality Improvement vision of supporting children’s health not only by pre- The CDPC program funded numerous projects link- venting morbidity, but also by maximizing children’s ing child development to the burgeoning Quality physical, social, cognitive, and emotional growth and Improvement (QI) movement. The ABCD II states development. were encouraged to include a quality evaluation measure Robert Sege, M.D., Ph.D., of Boston in their proposals, and the issue was a major element of University School of Medicine, for example, was among the Screening Academy. But even before it reorganized those convinced that favoring the randomized clini- to put all child programs under the CDPC umbrella, cal trial (RCT) did not serve children well when it the Fund had invested resources to support NICHQ came to critiquing the evidence for pediatric primary in finding ways to foster quality improvement by the care, especially care focused on prevention and health use of incentives for developmental screening.107 The promotion. Received notions of “evidence” needed CDPC team recognized NICHQ’s potential to extend to be modernized in order to assess interventions for QI initiatives nationwide and to broaden its then well-child care. Sege argued for an alternative set of illness-oriented focus to embrace a prevention-oriented criteria that did not merely analyze outcomes in sick 32 A HISTORY OF THE COMMONWEALTH FUND’S CHILD DEVELOPMENT AND PREVENTIVE CARE PROGRAM approach. To these ends, they funded and participated supported Yale health services researcher Paul Cleary, in NICHQ’s annual meetings.108 Ph.D., in his collaboration with the American Board of The Fund also supported a learning collab- Pediatrics, the AAP, and other leading organizations in orative to improve child development services. Peter revising the ambulatory care version of the Consumer Margolis, M.D., Ph.D., at the University of North Assessment of Health Plans Survey (CAHPS), the Carolina refined a “Breakthrough Series” curriculum nation’s most widely used and well-respected tool for developed for physicians and office staff to provide measuring parents’ experience with their children’s care. infants and toddlers with developmental services. The new version included questions on the preventive Fifteen pediatric practices in Vermont, under the guid- and developmental services delivered to children.112 ance of Judith Shaw, Ed.D., M.P.H., R.N., drew on the Sarah Scholle, Dr.P.H., at the National Center curriculum tools and materials, implemented innova- for Quality Assurance (NCQA), a private nonprofit tions in their practices, and achieved improvements organization dedicated to improving health care quality, in the quality of the child development services they spearheaded another major Fund-sponsored attempt to provided.109 engage with the QI movement. Before Scholle began With Fund support, Christina Bethell built on working with the Fund, the NCQA had directed little her PHDS measure for care quality. The PHDS had of its attention to children. Scholle was especially already employed the innovation of parent reporting concerned about the measures of quality maintained to create a validated measure of care quality. CAHMI by NCQA, known as the Healthcare Effectiveness and the Fund considered parent reports and surveys to Data and Information Set (HEDIS), which focused be keys to investing parents in developmental screen- on providing care at recommended intervals, not on ing and turning them into consumers and partners who guaranteeing the substance and quality of the care pro- were informed enough to critique its quality.110 vided. The HEDIS standards were especially important For many years, Schor had dreamed of develop- because they were used by most private and public ing a universal system of parent education similar to the health plans in the U.S. to track quality. Scholle cre- model of prenatal education already being used in the ated new pediatric preventive measures that captured U.S. Like Paul Dworkin, Neal Halfon, and other lead- quality and that were designed to replace or supple- ers in the field, Schor had long argued that parents were ment those used by HEDIS. As they had done for Paul a huge untapped resource, since most pediatric health Cleary, CDPC program staff put Scholle in touch with care recommendations must be translated into action by NASHP, the AAP, and other interested organizations parents, especially in the case of very young children. At to create a collaborative network that coordinated all of stake was the difference between an adversarial system their efforts.113 and a cooperative one. Any model that referred children The Fund recognized that usually there were for developmental services only when a problem arose no mechanisms to assist practitioners in adapting to the was in effect punitive and sent parents the message that changing nature and improving the quality of pediatric the physician or nurse practitioner held them respon- care, including developmental screening. One model sible for having done “something wrong.”111 of direct support to pediatric practices was found in Following up on the development of quality the Vermont Child Health Improvement Program measures for the PHDS, in 2004 Bethell began to study (VCHIP). Founded by Judith Shaw, Ed.D., M.P.H., the psychometrics of a new PHDS to capture quality at R.N., and her colleagues at the University of Vermont the level of the individual practice. Her efforts aimed to School of Medicine, VCHIP worked closely with strengthen the partnership between parents and health Vermont’s Medicaid program, reaching out to individ- care providers and to access parents’ opinions about the ual practices to implement pediatric QI initiatives. All resulting quality of care. In this same area, the Fund Medicaid agencies are required to track the quality of www.commonwealthfund.org 33 health care delivered to Medicaid managed-care enroll- of these challenging metrics had been made possible ees. The VCHIP initiative had served the crucial func- by Fund-sponsored projects on quality. Building on tion of External Quality Review Organization (EQRO) the ABCD II efforts related to quality, the 10 states for Vermont’s Primary Care Case Management awarded CHIPRA quality grants by the Centers for Program, and demonstrated that EQROs were an effec- Medicare and Medicaid Services (CMS) have worked tive vehicle for improving the quality of poor children’s actively since 2010 to enhance well-child care–related preventive care. The Fund supported dissemination quality measures.117 efforts to replicate the VCHIP model which, as of 2011, was operational in 17 other states.114 The Fund Care Coordination sponsored several other researchers, such as Henry Ireys Those invested in intensifying the focus on develop- at Mathematica Policy Research Institute, who were ment in well-child care knew that screening tools and exploring ways of employing EQROs in this hands-on quality improvement, important as they were, would role to improve quality.115 amount to little in the absence of systems for referral In 2007, the reauthorization debate for the and care coordination once a health care provider had State Children’s Health Insurance Program (SCHIP) identified a problem. This issue had been identified by took up the issue of developmental services and the the ABCD II states as a prime barrier to the exten- challenge of ensuring quality of care. This new focus sion of screening.118 Moreover, just as in the cases of of attention resulted in part from the work of Scholle, screening and quality improvement, the evidence base Bethell, and Cleary, and from other Fund-supported and best practices for care coordination were in short projects. The latter included the work of Lisa Simpson, supply. Program staff understood the need for a series M.B., B.Ch., M.P.H., F.A.A.P., who studied strate- of projects that would define care coordination and gies for improving the quality of care provided through develop approaches to providing it. In 2006, Amy Fine, SCHIP and Medicaid, and Charles Bruner, executive M.P.H., a child public health consultant, and Rochelle director of the Child and Family Policy Center, who Mayer, M.Ed., Ed.D., director of the National Center convened a group of child health experts and health for Education in Maternal and Child Health, published policy advocates to raise the profile of these issues their Fund-supported work in which they reviewed among stakeholders.116 current approaches to linking pediatric primary care As a consequence of all these efforts, when practices with community-based developmental services President Barack Obama signed the Children’s Health and in providing recommendations on how to improve Insurance Program Reauthorization Act (CHIPRA) those linkages.119 into law in January 2009, a number of quality measures In 2009, the Fund reached out to Richard with links to the Fund were embedded in the statute. Antonelli, M.D., M.S., medical director of Children’s CHIPRA stipulated that an initial core set of chil- Hospital in Boston’s Integrated Care Organization dren’s health care quality measures for voluntary use by and a Harvard Medical School faculty member, and Medicaid and SCHIP programs be posted for public Jeanne W. McAllister, B.S.N., M.S., M.H.A., direc- comment by January 1, 2010. By 2011, the NCQA had tor and cofounder of the Center for Medical Home accomplished the difficult task of obtaining National Improvement, in Concord, New Hampshire. Antonelli Quality Forum endorsement for measures related to was a long-standing ABCD faculty member who also developmental screening. NQF endorsement repre- served on one of the NASHP working groups on care sented an especially high benchmark because, to obtain coordination. Committed to the concept of care coordi- it, a measure not only must demonstrate scientific rigor, nation, in the 1990s he had set out to demonstrate that but must also be supported by evidence of its impor- what kept chronically ill children and very ill technol- tance, feasibility, and replicability. NCQA’s attainment ogy-dependent children healthier was not a care model 34 A HISTORY OF THE COMMONWEALTH FUND’S CHILD DEVELOPMENT AND PREVENTIVE CARE PROGRAM based on unlimited access to expensive physician sub- ABCD III specialists, but rather a family-centered team approach. These projects generated substantial new information Creating structures of care that allowed nurses to fully about care coordination, and in October 2009 the Fund employ their care-coordination skills, Antonelli and and NASHP were ready to launch ABCD III, under McAllister demonstrated that this model resulted in whose aegis state Medicaid programs would develop healthier children, more satisfied parents, and cost policies and programs to improve care coordination in reductions.120 Antonelli believed that children needed to communities. The goals of ABCD III were the most be triaged not only by medical diagnosis, but by quanti- ambitious yet. The chosen states, Arkansas, Illinois, fied estimations of their care coordination needs. His Minnesota, Oklahoma, and Oregon, were charged with efforts in the 1990s coincided with the AAP’s embrace building on ABCD I and II using sustainable policy of the idea of the “medical home,” meaning that every and systems improvements to develop working models youngster’s care would be managed by one health care of community-based care coordination, linking primary provider.121 care practices with other community service providers, Other CDPC projects aimed to identify barri- much as was laid out in the earlier work by Fine, Mayer, ers perceived by policymakers and health care provid- and Antonelli. ers that hindered implementation of care coordination Looking back at ABCD I and II, and observ- and to identify and disseminate best practices. Edward ing ABCD III as it unfolds, the many ways in which Wagner, M.D., director of the MacColl Institute, and the initiative has changed the delivery of developmental his colleagues developed a tool kit for coordinating care. services for young children are apparent. It has fostered In another instance, the Illinois chapter of the AAP numerous policy and practice improvements. Thirty- developed a training model of approaches for putting two states have instituted new policies that support pediatric practices in touch with early intervention pro- developmental screening, for example. Eight of them grams so that children who needed referral or follow-up have created mechanisms that foster communication could receive it seamlessly.122 between primary care providers and educators that Paul Dworkin’s successful “Help Me Grow” previously were not possible. At least three other states program in Connecticut was one of the few defined have standardized diagnostic nomenclatures across sys- models of care coordination, and with Fund support tems, thereby facilitating Medicaid billing. he evaluated and then replicated it in five other states; The effects of ABCD endure, and the initia- the replication process continued with support from tive continues to produce results. Thanks to the success the W.K. Kellogg Foundation. Sharon Silow-Caroll, of ABCD, NASHP has been asked to represent child M.B.A., M.S.W., of the research and consulting firm development–related issues for the National Early Health Management Associates, studied promising Childhood Systems Working Group, a networking models of care coordination in a number of states.123 organization for foundations interested in child health. And, in order to find ways of embedding care coordi- It has continued to provide a vehicle for ABCD alumni nation in Medicaid funding streams, the Fund again states to advise CMS about ongoing ways to improve drew on the expertise of Sara Rosenbaum and Kay the health and well-being of young children through Johnson.124 EPSDT. And, in 2012, when CMS proposed a bill- ing code change that would make it harder to bill for www.commonwealthfund.org 35 developmental screening through Medicaid, NASHP But perhaps the most telling marker of its success is galvanized ABCD alumni states to successfully com- that many alumni states continue to refer to themselves municate the potential negative impact of this ruling.125 as “ABCD states,” supporting initiatives that improve Finally, other sustainable changes have been child development. Colorado, for example, secured state wrought through ABCD. Four states, for example, are funds to continue its ABCD efforts. Thirty-five states creating developmental screening and care coordina- as well as Washington, D.C., and Puerto Rico continue tion continuing education initiatives that physicians to participate in the alumni listserv and webinars.126 can complete in order to maintain board certification. 36 A HISTORY OF THE COMMONWEALTH FUND’S CHILD DEVELOPMENT AND PREVENTIVE CARE PROGRAM PART IV. “PURCHASING” CHILD helping them to achieve their highest potential. The Fund’s successes in creating the model for well-child HEALTH IN THE 21ST-CENTURY care in the 1920s followed from its designated focus UNITED STATES on children, its recognition of their special place in American society, and the national rhetorical consensus The field was begging for leadership.…Even that children deserved special attention. A move away though the “research engine” was making the from this kind of stand-alone program for children risks need clearer and clearer, the health system had neglecting their unique needs. to be made to see that it made sense. The CDPC program’s many successes may also —David W. Willis, M.D., F.A.A.P. have been a result of its choice to home in on one target issue—developmental screening for very young children, The Presence of the Past a group for whom there were already statutory mecha- In 2011, the Fund restructured its programmatic initia- nisms in place through EPSDT that might be subject to tives to widen its focus from a single group defined by fuller exploitation. This kind of targeting may not be so age to the population at large, aiming to improve the easy for other groups, even other subpopulations within total health care system. The quality and care coordina- pediatrics. For instance, although science continues to tion initiatives that defined the CDPC program were reveal the dynamism of the adolescent brain, it will be merged into these new, broader programs. The strate- a more complicated challenge to improve developmen- gies that had proved successful in the ABCD program, tal surveillance of this group because, relative to young such as bringing stakeholders together at the state and children, there are fewer existing legislative mechanisms local levels, would now be applied to other issues and to be leveraged and fewer community programs with set in the context of the Affordable Care Act.127 which to collaborate. History suggests that this kind of a shift Another potential challenge to continuing entails both jeopardy and opportunity for children. The the trajectory set by the CDPC program is the grow- Affordable Care Act offers tremendous potential for ing political polarization in the United States. A lack positive change. For example, it is fitted with measures of agreement, or even civil discussion, about what tying provider reimbursements to quality metrics and society “owes” children and poor families means that with measures to promote health care coordination these groups are constantly threatened with federal, and efficiency. And, to the extent that the Fund will be state, and local budget cuts to the safety net they rely using its formidable set of resources to achieve a reori- on. Provisions for child health are being undermined entation of the delivery of health care in the U.S., it can despite the florid rhetoric pervading American political be expected to maintain the momentum gained from discourse to the effect that all children are “deserving.” the CDPC program. Studies demonstrate the economic benefits to society The move away from a targeted focus on chil- of enhancing children’s development, while policy deci- dren does not come without risk, however. The investi- sions are too often made based on the political advan- gators funded through the CDPC program built a pow- tages of the moment. Nor have the strides that have erful argument and generated convincing evidence for been made in developmental screening for indigent Abraham Jacobi’s argument that children are not just children actually reached all of those children; 10 per- small adults. Their health care needs are different, and cent of children remain uninsured and almost a quarter so is the evaluation template for an intervention’s suc- are underinsured, meaning that many lack access to pre- cess or failure: children’s health is predicated not on dis- ventive services, including developmental screening.128 ease prevention alone, but on maximizing all children’s Because health care financing in the United emotional, physical, and social health with the aim of States is a complex, class-based mixture of public and www.commonwealthfund.org 37 private initiatives, what we as a society mean by “child History cannot be reduced to ready lessons that health policy” continues to vary depending upon what can be deployed to immunize us against making deci- set of children are under discussion. Most nonpoor sions for the future that might be considered “bad.” But children receive health benefits assigned by their par- knowing what happened in the past, and why, can lead ents’ employers. Poor children are the topic of debate to a more informed appraisal of both the intended and as to which needs should be addressed by the “medi- unintended outcomes of previous actions and policies cal” system, which through “educational” programs, and and, as a result, a better discussion for future planning. which through “social welfare” mechanisms. It will be Studying the Fund’s approach to children’s develop- very difficult to carry forward Abraham Jacobi’s vision mental services also offers suggestions for how to bring of focusing on the “whole” child because health care about change not just in the area of children’s well- funding and structures have yet to support this ethos, being, but in other areas where complicated and endur- and child welfare and education initiatives arising from ing issues persist in American society. those legislative arenas are not easily integrated into initiatives for health care.129 Also, the silos isolating the 1. Generate solid and meaningful evidence. health, educational, and social welfare sectors from each Generating evidence is an important first step toward other remain firmly in place, and are likely to persist engaging stakeholders. The CDPC staff were aware until the U.S. shifts away from its class-based system from the beginning that to be effective in the long of health care. Despite these obstacles, however, the term, their models would have to be self-sustaining. CDPC has shown that parent, payer, and care provider Consequently, the program’s focus on screening, qual- partnerships can be constructed regardless of the sys- ity, and care coordination was accompanied by equal tem’s structure. And long-standing beliefs and practices attention to the political and social contexts in which about well-child care can be improved in cost-effective their efforts were situated, and resulted in a coherent, ways, as Oregon behavioral and developmental pediatri- ongoing strategy for policy improvement. This accom- cian David Willis, M.D. (not a Fund grantee), observed plishment can be attributed to careful grant-making; a in his characterization of the Fund’s contributions to commitment to ongoing, iterative dialogues with inves- children’s health in recent years.130 tigators; and regular review of projects to make sure they facilitated one another. Lessons Learned Despite all the challenges, The Commonwealth Fund 2. Use the evidence to engage payers and policymakers. has succeeded in improving child health in the United Engaging stakeholders cannot by itself create the neces- States again and again. The Fund’s enduring legacy to sary political will to effect policy improvements, but it children’s health is its nearly century-long attempt to lays the groundwork for change. Also helping to build create an integrated model of well-child care. Through engagement are translating findings into language and the CDPC program, the Fund created a model for ful- frameworks that are usable to stakeholders, having cred- filling the promise first made to poor children by the ible thought leaders and groups evaluate and promul- federal government in 1935, and reinforced in 1965 and gate evidence, and capitalizing on policy windows. 1967 with Medicaid and EPSDT legislation. It did so in much the same way that its first child-focused dem- 3. Address the problem from the top down and the onstration project had in the 1920s, by knitting together bottom up. The place of developmental screening and programs that already existed and demonstrating their follow-up referral in pediatric primary care had been worth. discussed for decades. The Fund’s work integrated and optimized the existing knowledge base in order 38 A HISTORY OF THE COMMONWEALTH FUND’S CHILD DEVELOPMENT AND PREVENTIVE CARE PROGRAM to generate a critical mass of new information in ways 5. Use what you already have. Was the health care sys- that ultimately improved the quality and increased tem the right place from which to address developmen- the extent of developmental screening. The top-down, tal screening for young children? The answer was clearly bottom-up strategy was more than the sum of its parts yes, because more than 95 percent of children come into in that it created a synergy of efforts. Work from the contact with a health care professional sometime during top resulted in child development being embedded in the first three years of life.131 Other approaches might national initiatives such as Bright Futures and secur- have been taken, but the Commonwealth Fund chose to ing a place in the quality measures of the NQF and build on its traditional object of focus—health care— CHIPRA. Work from the bottom, or practice level, and consequently, that was the “system” that Schor, produced standards and measures for tracking quality Abrams, and their grantees leveraged. In a parallel way, improvement (and identifying gaps in care) that served the Fund engaged its pilot states’ existing Medicaid, as a guide for ongoing, meaningful policy improvement. Title V, or EPSDT revenue streams, and aligned itself In its efforts to actually change practice, the Fund relied with burgeoning movements such as quality improve- on a learning collaborative on the ground, at the prac- ment and evidence-based managed care. tice level. The collaborative brought together health care providers and state Medicaid and EPSDT directors, 6. Depoliticize the issues. Over the course of the past letting them talk directly to one another about the com- generation, American society has grown more divided ponent parts of a developmental screening system and economically and socially, and more diverse culturally. brainstorm about how to fix system issues that stymied Children and families have been the topic of many reimbursement. These initiatives dramatically bridged debates, as when politicians took sides on the view the scientific, professional, and financial silos that exist of First Lady Hillary Rodham Clinton that it took a between and within the health, education, and social “village” to raise a child and the view of Senator Rick welfare systems. By building new coalitions, generat- Santorum of Pennsylvania that it took a “family.”132 ing new knowledge, and creating new discussions, the Commonwealth Fund colleagues deftly navigated Fund’s collaborative model achieved breakthroughs in these waters, refusing to be diverted by the question all directions. of whether it was right to invest in children because it was the moral thing to do, or because it made economic 4. Focus simultaneously on building blocks and dis- sense. Their data-driven message about developmental semination. Supplying support to develop exemplars screening was simple and powerful—but politically such as Bergman’s tiered-care model, Earl’s work with neutral—and spoke to everyone. The Fund’s efforts CCMC in North Carolina, and Dworkin’s “Help Me validated a core conservative belief that new money is Grow” initiative is a vital task, but it is equally impor- not the solution to every problem, while also placing tant to plan carefully early on for dissemination of the emphasis on the progressive value of caring for poor results and transfer of best practices to other settings. children, one of the nation’s most vulnerable groups. Generating innovative tools and quantifying the health benefits of developmental screening are but a part of the 7. Focus on the task, not the turf issues. The CDPC’s battle; the same is true of publishing findings. The ulti- leaders kept the focus on their program’s goals, not least mate goal must be to change practice and build systems, by disregarding conventional wisdom about how to and to do so, the instruments for dissemination must be make change. They built in local flexibility and discour- created. aged professional squabbles over who “owned” the field of developmental screening. www.commonwealthfund.org 39 8. Find the right people. The CDPC program would that transformed policy and standards of practice. The not have succeeded as it did without the very particu- ABCD laboratory suggests that, absent the CDPC lar gifts and qualifications of individual Fund staff, tools, the status quo would have been much harder to the NASHP leadership, and the committed cadre of challenge. investigators who crafted the new tools and measures The Child Development and Preventive Care program and The Commonwealth Fund’s almost 100-year history point up the unique role that foundations can play in policy improvement. Foundations possess the freedom to be creative, even provocative, in their strategies. They can commit in the long term to addressing complicated problems, and accelerate change that is already under way. The 1990s saw a groundswell of political, professional, and scientific support for investing in young children’s growth and development. The Fund built on that opportunity with clearly defined goals and a specific set of outcomes in mind. Through the research and dissemination activities sponsored by CDPC, the Fund not only facilitated the “rethinking” of well-child care that Ed Schor had challenged American health care providers to engage in, but put forward a successful model for bringing about sustainable and cost-effective change. 40 A HISTORY OF THE COMMONWEALTH FUND’S CHILD DEVELOPMENT AND PREVENTIVE CARE PROGRAM NOTES Specifications” (on file with The Commonwealth Fund); and Agency for Healthcare Research and 1 Responsible Reform for the Middle Class, demo- Quality, “Background Report for the Request for crats.senate.gov/reform, “The Patient Protection and Public Comment on Initial, Recommended Core Affordable Care Act: Detailed Summary,” http:// Set of Children’s Healthcare Quality Measures for dpc.senate.gov/healthreformbill/healthbill04.pdf; Voluntary Use by Medicaid and CHIP Programs,” and HealthCare.gov, “Key Features of the http://www.ahrq.gov/policymakers/chipra/overview/ Affordable Care Act, by Year,” http://www.health- background/index.html. care.gov/law/timeline/full.html. 6 T. Roosevelt, “Special Address to the Two Houses of 2 U.S. Dept. of Health and Human Services, Congress, February 15, 1909,” Presidential Addresses “Affordable Care Act Extended Free Preventive and State Papers and European Addresses (New York: Services to 54 Million Americans with Private Review of Reviews Company, 1910), 2134. Health Insurance in 2011,” News release, Feb. 12, 7 2012, http://www.hhs.gov/news/ “Child Health Work,” New York Times, Feb. 21, press/2012pres/02/20120215a.html/. 1924, p. 16, accessed Jan. 1, 2012. 8 3 American Academy of Pediatrics, “American R. A. Meckel, “Levels and Trends of Death and Academy of Pediatrics Commends Supreme Court Disease in Childhood, 1620 to the Present,” in Decision to Uphold the Affordable Care Act,” News Children and Youth in Sickness and in Health, eds. J. release, June 28, 2012, http://www.aap.org/en-us/ Golden, R. A. Meckel, and H. Munro Prescott about-the-aap/aap-press-room/pages/American- (Westport, Conn.: Greenwood Press, 2004), 3–25. Academy-of-Pediatrics-Commends-Supreme- 9 H. M. Biggs, “Public Health Is Purchasable,” Court-Decision-to-Uphold-the-Affordable-Care- Monthly Bulletin of the Department of Health of the Act.aspx. City of New York, Oct. 1911 1:225–26. 4 J. P. Brosco, “Weight Charts and Well-Child Care: 10 A. Jacobi, Contributions to Pediatrics: Volume I, ed. W. How the Pediatrician Became the Expert in Child J. Robinson (New York: Critic and Guide Company, Health,” Archives of Pediatric and Adolescent Medicine, 1909), 41–51. Dec. 2001 155(12):1385–89. 11 5 E. Toon, “Selling the Public on Public Health: The Medicaid.gov, “Children’s Health Insurance Program Commonwealth and Milbank Health Demonstrations Reauthorization Act (CHIPRA),” http://www.med- and the Meaning of Community Health Education,” icaid.gov/Medicaid-CHIP-Program-Information/ in Philanthropic Foundations: New Scholarship, New By-Topics/Childrens-Health-Insurance-Program- Possibilities, ed. E. Condliffe Lagemann (Bloomington, CHIP/CHIPRA.html; National Quality Forum, Ind.: Indiana University Press, 1999), 119–30. “NQF Releases Updated Child Quality Health 12 Measures,” News release, Aug. 15, 2011, http://www. T. Skocpol, “Statebuilding for Mothers and Babies: qualityforum.org/News_And_Resources/Press_ The Children’s Bureau and the Sheppard–Towner Releases/2011/NQF_Releases_Updated_Child_ Act,” in Protecting Soldiers and Mothers: The Political Quality_Health_Measures.aspx; Child and Origins of Social Policy in the United States Adolescent Health Measurement Initiative, “Child (Cambridge, Mass.: Belknap Press of Harvard Health and Health Care Quality Measures from the University Press, 1992), 480–524. NSCH and NS-CHSCN Endorsed for Use by the 13 National Quality Forum,” Oct, 2011, http://child- C. Dinwiddie, Child Health and the Community healthdata.org/docs/drc/endorsed-nqf-measures-1- (New York: The Commonwealth Fund, 1931), 1; pager-10-13-11-pdf.pdf; CAHMI grant application and A. McG. Harvey and S. L. Abrams, For the to The Commonwealth Fund entitled “Measure Welfare of Mankind: The Commonwealth Fund and Stewardship for the CHIPRA Core Measure American Medicine (Baltimore: Johns Hopkins Focused on Standardized Screening” and Appendix University Press, 1986), 91–93, 104–5, 537–38. A, “NCQA Developmental Screening Measures 14 C. Dinwiddie, Commonwealth Fund Eighth Annual Report for the Year 1925–1926 (New York: The Commonwealth Fund, 1927), 28–29, 60–63. www.commonwealthfund.org 41 15 27 Brosco, “Weight Charts and Well-Child Care,” R. Stevens, Welfare Medicine in America (New York: 2001; and S. A. Halpern, American Pediatrics: The The Free Press, 1974); and D. G. Smith and J. D. Social Dynamics of Professionalism (Berkeley, Calif.: Moore, Medicaid Politics and Policy, 1965–2007 University of California Press, 1988), 93. (New Brunswick, N.J.: Transactions Publishers, 16 2010). Harvey and Abrams, For the Welfare of Mankind, 28 1986, 33–36, 41–46. S. Rosenbaum, D. R. Mauery, P. Shin et al., National 17 Security and U.S. Child Health Policy: The Origins and K. F. Lenroot, The Children’s Bureau: Yesterday, Today, Continuing Role of Medicaid and EPSDT and Tomorrow (Washington, D.C.: Government (Washington, D.C.: George Washington University, Printing Office, 1937). 2005). See also http://paheadstart.org/index.php/ 18 H. Markel and J. Golden, “Successes and Missed head-start-basics/head-start-history/ and http:// Opportunities in Protecting Our Children’s Health: www.acf.hhs.gov/programs/ohs/about/history-of- Critical Junctures in the History of Children’s head-start. Health Policy in the United States,” Pediatrics, April 29 P. B. Edelman, Searching for America’s Heart: RFK 2005 115(4 Suppl.):1129–33; and C. A. Connolly, and the Renewal of Hope (Boston: Houghton Mifflin Saving Sickly Children: The Tuberculosis Preventorium Co., 2001). in American Life, 1909–1970 (New Brunswick, N.J.: 30 Rutgers University Press, 2008). R. J. Haggerty and S. B. Friedman, “History of 19 Developmental–Behavioral Pediatrics,” Journal of A. Gesell, “Developmental Pediatrics: Its Tasks and Developmental and Behavioral Pediatrics, Feb. 2003 Possibilities,” Pediatrics, March 1948 1(3):331–35. 24(1 Suppl.):S1–S18. 20 L. F. Hill, “The American Academy of Pediatrics— 31 S. Rosenbaum and P. H. Wise, “Crossing the Its Growth and Development,” Pediatrics, Jan. 1948 Medicaid–Private Insurance Divide: The Case of 1(1):1–7; and J. L. Wilson, “The Committee for EPSDT,” Health Affairs, March/April 2007 Improvement of Child Health,” Pediatrics, May 26(2):382–93. 1948 1(5):657–61. 32 21 Rosenbaum, Mauery, Shin et al., National Security, Committee for the Study of Child Health Services, 2005; Interview with Marion F. Earls, M.D., Child Health Service and Pediatric Education (New F.A.A.P., medical director, Guilford Child Health, York: The Commonwealth Fund, 1949). Inc., Aug. 29, 2011; and A. Sardell and K. Johnson, 22 K. Bain and H. C. Stuart, “Facts and Figures About “The Politics of EPSDT Policy in the 1990s: Policy Child Health in the United States,” American Entrepreneurs, Political Streams, and Children’s Journal of Public Health, Sept. 1949 39(9):1091–98. Health Benefits,” Milbank Quarterly, 1998 76(2):175–205. 23 P. W. Beaven, “The Influence of the Study of Child 33 Health Services Conducted in 1946–1948,” J. Quadagno, One Nation Uninsured: Why the U.S. Pediatrics, July 1954 14(1):64–76. Has No National Health Insurance (New York: Oxford University Press, 2005); and O. C. Stine, 24 Ibid. “The Comprehensive Child Development Bill and 25 Its Veto,” American Journal of Public Health, April Golden Anniversary White House Conference on 1972 62(4):463–64. Children and Youth, ed. E. K. Ginzberg (New York: 34 Columbia University Press, 1960); and S. Mintz, Rosenbaum, Mauery, Shin et al., National Security, Huck’s Raft: A History of American Childhood (Boston: 2005; Sardell and Johnson, “Politics of EPSDT Belknap Press of Harvard Press, 2006). Policy,” 1998; and S. Rosenbaum, S. Wilensky, and 26 K. Allen, EPSDT at 40. Modernizing a Pediatric Harvey and Abrams, For the Welfare of Mankind, Health Policy to Reflect a Changing Health Care 1986, 173, 342–44. System, Resource Paper #317 (Hamilton, N.J.: Center for Health Care Strategies, Inc., July 2008), http://www.chcs.org/usr_doc/EPSDT_at_40.pdf. 42 A HISTORY OF THE COMMONWEALTH FUND’S CHILD DEVELOPMENT AND PREVENTIVE CARE PROGRAM 35 42 S. A. Halpern, American Pediatrics: The Social Interview with Neal Halfon, M.D., M.P.H., director, Dynamics of Professionalism (Berkeley, Calif.: Center for Healthier Children, Families & University of California Press, 1988), 110–11. Communities, University of California, Los Angeles, 36 July 29, 2011. Institute of Medicine, Community Oriented Primary 43 Care: New Directions for Health Services Delivery M. Green, ed., Bright Futures: Guidelines for Health (Washington, D.C.: National Academies Press, Supervision of Infants, Children, and Adolescents 1983). (Washington, D.C.: National Center for Education 37 in Maternal and Child Health, 1994); and F. A. J. B. Richmond, “Symposium on Behavioral Campbell and C. T. Ramey, “Effects of Early Pediatrics—An Idea Whose Time Has Arrived,” Intervention on Intellectual and Academic Pediatric Clinics of North America, Aug. 1975 Achievement: A Follow-Up Study of Children from 22(3):517–23; P. H. Dworkin, “Coming Full Circle: Low-Income Families,” Child Development, April Reflections at the Interface of Developmental– 1994 65(2):684–98. Behavioral and General Pediatrics,” Journal of 44 Developmental and Behavioral Pediatrics, April 2007 E. A. McGlynn, N. Halfon, and A. Leibowitz, 28(2):167–72: and R. J. Haggerty, K. J. Roghmann, “Assessing the Quality of Care for Children,” and I. B. Pless, Child Health and the Community Archives of Pediatric and Adolescent Medicine, April (New York: John Wiley and Sons, 1975), 94–95. 1995 149(4):359–68. 38 45 “ADHD Through the Years” (Atlanta: Centers for Halfon interview, July 29, 2011; Willis interview, Disease Control and Prevention), http://www.cdc. Sept. 16, 2011; and B. Zuckerman, M. Kaplan- gov/ncbddd/adhd/timeline.html; and M. Wingate, Sanoff, S. Parker, and K. T. Young, “The Healthy B. Mulvihill, R. S. Kirby et al., “Prevalence of Steps for Young Children Program,” Zero to Three, Autism Spectrum Disorders—Autism and June/July 1997 17(6):20–25. Developmental Disabilities Monitoring Network, 14 46 Sites, United States, 2008,” Morbidity and Mortality Zuckerman, Kaplan-Sanoff, Parker, and Young, Weekly Report: Surveillance Summaries, March 30, “Healthy Steps for Young Children Program,” 1997, 2012 61(3):1–19. quote on p. 20. 47 39 C. Lewis, “Does Comprehensive Care Make a Biographical data on Margaret E. Mahoney, http:// Difference? What Is the Evidence?” American asteria.fivecolleges.edu/findaids/sophiasmith/ Journal of Diseases of Children, Dec. 1971 mnsss267.html; see also http://www.common- 122(12):469–74. wealthfund.org/Grants/1998/Jan/Building-Support- for-the-Healthy-Steps-for-Young-Children-Pro- 40 Quality of Care for Young Children Program gram.aspx; and J. A. Barondness, “Margaret E. Overview—Fall 2002 Draft, Sept. 18, 2002 (on file Mahoney: Career Highlights, Bulletin of the New with The Commonwealth Fund); Interview with York Academy of Medicine, Winter 1995 72(2 David W. Willis, M.D., F.A.A.P., medical director, Suppl.):551. Artz Center for Developmental Health and 48 Audiology, Sept. 16, 2011; and Sardell and Johnson, Healthy Steps website, www.healthysteps.org; M. C. “Politics of EPSDT Policy,” 1998. Barth, Healthy Steps at 15: The Past and Future of an Innovative Preventive Care Model for Children (New 41 American Academy of Pediatrics, Council on York: The Commonwealth Fund, Dec. 2010); N. Pediatric Practice, Standards of Child Health Care Halfon and M. Inkelas, “Optimizing the Health and (Elk Grove Village, Ill.: American Academy of Development of Children” Journal of the American Pediatrics, 1967); D. Bergman, P. Plsek, and M. Medical Association, Dec. 17, 2003 290(23):3136–38; Saunders, A High-Performing System for Well-Child and B. Guyer, M. Barth, D. Bishai et al., Healthy Care: A Vision for the Future (New York: The Steps: The First Three Years—The Healthy Steps for Commonwealth Fund, Oct. 2006); and interview Young Children Program National Evaluation with David Bergman, M.D., associate professor, (Baltimore, Md.: Johns Hopkins University Stanford University School of Medicine, Aug. 1, Bloomberg School of Public Health, 2003), http:// 2011. www.jhsph.edu/wchpc/projects/Healthy_Steps/ frnatleval.html. www.commonwealthfund.org 43 49 52 R. Shore, Rethinking the Brain (New York: Families National Center for Health Statistics, Health United and Work Institute, 1997); Starting Points: Meeting States 1996–1997 and Injury Chartbook (Hyattsville, the Needs of Our Youngest Children (New York: Md.: NCHS, 1997), http://www.cdc.gov/nchs/data/ Carnegie Foundation, 1994), http://carnegie.org/fil- hus/hus96_97.pdf; Brooks-Gunn and Duncan, eadmin/Media/Publications/PDF/Starting%20 “Effects of Poverty on Children,” 1997; P. Budetti, Points%20Meeting%20the%20Needs%20of%20 C. Berry, P. Butler et al., Assuring the Healthy Our%20Youngest%20Children.pdf; and N. Halfon Development of Young Children: Opportunities for and K. T. McLearn, “Families with Children Under States (New York: The Commonwealth Fund, Feb. 3: What We Know and Implications for Results and 2000); Kaiser Commission on the Future of Policy,” in Child Rearing in America: Challenges Medicaid, Medicaid Facts: Medicaid’s Role for Facing Parents with Young Children, eds. N. Halfon, Children (Washington, D.C.: Henry J. Kaiser Family K. T. McLearn, and M. A. Scheuster (New York: Foundation, 1997); and K. S. Collins, K. T. Cambridge University Press, 2002), 367–402. McLearn, M. K. Abrams et al., Improving the 50 Delivery and Financing, 1998. K. T. Young, K. Davis, C. Schoen et al., “Listening to 53 Parents: A National Survey of Parents with Young Interview with Neva Kaye, managing director, Children,” Archives of Pediatric and Adolescent National Academy for State Health Policy, July 29, Medicine, March 1998 152(3):255–62; K. T. Young, 2011; Interview with Melinda K. Abrams, M.S., vice K. Davis, and C. Schoen, The Commonwealth Fund president, The Commonwealth Fund, July 22, 2011; Survey of Parents with Young Children (New York: and Collins, McLearn, Abrams et al., Improving The Commonwealth Fund, 1996); B. Zuckerman, S. Delivery and Financing, 1998. Parker, M. Kaplan-Sanoff et al., “Healthy Steps: A 54 Case Study of Innovation in Pediatric Practice,” Regalado and Halfon, “Primary Care Services Pediatrics, Sept. 2004 114(3):820–26; K. S. Collins, Promoting,” 2001. K. T. McLearn, M. K. Abrams et al., Improving the 55 Abrams interview, July 22, 2011; 1999 request for Delivery and Financing of Developmental Services for proposals for ABCD I; M. F. Earls, “ABCD Low-Income Young Children (New York: The (Assuring Better Child Health and Development): Commonwealth Fund, Nov. 1998); E. A. McGlynn, Screening and Surveillance, Referral, and Linkages N. Halfon, and A. Leibowitz, “Assessing the Quality to Community Resources in Primary Care,” AAP of Care for Children: Prospects Under Health Section on Developmental and Behavioral Pediatrics Reform,” Archives of Pediatric and Adolescent Newsletter, Spring 2010, http://www2.aap.org/sec- Medicine, April 1995 149(4):359–68; J. Brooks- tions/dbpeds/pdf/PDFNewContent%5CImplement Gunn and G. J. Duncan, “The Effects of Poverty on ScreenTools%5CABCD.pdf; Budetti, Berry, Butler Children,” The Future of Children, Summer/Fall et al., Assuring the Healthy Development of Young 1997 7(2):55–71; and Kids These Days ’99: What Children, 2000; Budetti, Pediatric Developmental Americans Really Think About the Next Generation Services Program, #980559; K. S. Collins, K. T. (New York: Public Agenda, 1999), 19, http://www. McLearn, M. K. Abrams et al., Improving the publicagenda.org/files/pdf/kids_these_days_99.pdf. Delivery and Financing, 1998; and M. Kaplan- 51 M. Regalado and N. Halfon, “Primary Care Services Sanoff, T. W. Brown, and B. S. Zuckerman, Promoting Optimal Child Development from Birth “Enhancing Pediatric Primary Care for Low Income to Age 3 Years,” Archives of Pediatric and Adolescent Families: Cost Lessons Learned from Pediatric Medicine, Dec. 2001 155(12):1311–22; Interview Pathways to Success,” Zero to Three, June/July 1997 with Kay Johnson, M.P.H., M.Ed., president, (17):34–36. Johnson Consulting Group, Inc., July 29, 2011; and 56 C. Bethell, C. Beck, and E. L. Schor, “Assessing Commonwealth Fund Quality of Care for Young Health System Provision of Well-Child Care: The Children Program description, Aug. 24, 2001. Promoting Healthy Development Survey,” Pediatrics, May 2001 107(5):1084–94. 57 Johnson interview, July 29, 2011; and “The Evolution of Community Care of North Carolina,” http://www.communitycarenc.org/about-us/history- ccnc-rev/. 44 A HISTORY OF THE COMMONWEALTH FUND’S CHILD DEVELOPMENT AND PREVENTIVE CARE PROGRAM 58 70 H. Pelletier and M. K. Abrams, The North Carolina E. L. Schor, “Comments on Child Development and ABCD Project: A New Approach for Providing Preventive Care Program Proposal,” letter to S. C. Developmental Services in Primary Care Practice Schoenbaum, Aug. 26, 2001. In the letter, Schor (New York: Commonwealth Fund, July 2002). sketched his thoughts about the key issues related to 59 developmental screening in the United States and Earls interview, Aug. 29, 2011. urged The Commonwealth Fund to take a long- 60 M. F. Earls and S. S. Hay, “Setting the Stage for term and strategic approach to improving pediatric Success: Implementation of Developmental and primary care in the United States. Behavioral Screening and Surveillance in Primary 71 Healthy Children: Investing in the Future Care Practice—The North Carolina Assuring Better (Washington, D.C.: Office of Technology Child Health and Development (ABCD) Project,” Assessment, Feb. 1988), 14; On October 10, 2002, Pediatrics, July 2006 118(1):e183–e188. The Commonwealth Fund brought together an 61 Earls interview, Aug. 29, 2011. advisory committee of pediatric thought leaders to discuss how the Fund could facilitate ways in which 62 Ibid.; and M. F. Earls, “ABCD: Screening & the pediatric primary care system in the United Surveillance,” 2010. States could better serve children and families. The 63 group met in Boston, Mass., and outlined sugges- Earls and Hay, “Setting the Stage for Success, 2006; tions for reaching parents and practitioners: and H. Pelletier and M. K. Abrams, ABCD: Lessons “Advancing Well-Child Care in the U.S.: Six from a Four-State Consortium (New York: The Organizational Frames” (on file with The Commonwealth Fund, Dec. 2003). Commonwealth Fund); and Schor, “Measurable 64 Development in Parents,” 1997. C. A. Berry, G. S. Krutz, B. E. Langner et al., “Jump-Starting Collaboration: The ABCD Initiative 72 Kaye interview, July 29, 2011; Schoenbaum inter- and the Provision of Child Development Services view, Aug. 3, 2011. Through Medicaid and Collaborators,” Public 73 Administration Review, May/June 2008 68(3):480– Quality of Care for Young Children, draft, July 27, 90. 2002 (on file with The Commonwealth Fund); E. L. 65 Schor, presentation to Commonwealth Fund Institute of Medicine, Crossing the Quality Chasm: A Program Review Committee, July 2002. The pur- New Health System for the 21st Century (Washington, pose of the presentation was to sketch the outline D.C.: National Academies Press, 2001), http:// for implementation of the new Quality of Care for books.nap.edu/openbook.php?record_id=10027. Young Children initiative to thought leaders and 66 stakeholders assembled by Fund leadership (on file “Developmental Surveillance and Screening of with The Commonwealth Fund; and Quality of Care Infants and Young Children,” Pediatrics, July 2001 for Young Children Program Overview, Fall 2002. 108(1):192–96. 74 67 “Advancing Well-Child Care in the U.S.: Six Commonwealth Fund Program Officer Job Organizational Frames,” 2002. Description, Child Development and Preventive Care Program, Sept. 2001. 75 Ibid.; Interview with Paul H. Dworkin, M.D., pro- 68 fessor, Department of Pediatrics, University of Interview with Stephen C. Schoenbaum, M.D., Connecticut School of Medicine, Sept. 12, 2011; M.P.H., former executive vice president for pro- and Commonwealth Fund Completed Grant Memo grams, The Commonwealth Fund, on Melinda #20030666. Abrams’ attributes, Aug. 3, 2011; and conversation with The Commonwealth Fund’s Melinda Abrams, 76 J. Bogin, “Enhancing Developmental Services in March 2, 2012. Primary Care: The Help Me Grow Experience,” 69 Journal of Developmental and Behavioral Pediatrics, E. L. Schor, “Measurable Development in Parents: Feb. 2006 27(1 Suppl.):S8–S12. A Goal of Effective Primary Care Pediatrics,” Zero to Three, June/July 1997. www.commonwealthfund.org 45 77 86 L. M. Olson, M. Inkelas, N. Halfon et al., “Overview Interview with Laura Sices, M.D., assistant profes- of the Content of Health Supervision for Young sor, Department of Pediatrics, Boston University Children: Reports from Parents and Pediatricians,” School of Medicine, Aug. 12, 2011; and Willis Pediatrics, June 2004 113(6 Suppl.):1907–16. interview, Sept. 16, 2011. 78 87 E. L. Schor, “Rethinking Well-Child Care,” M. Regalado and N. Halfon, Primary Care Services: Pediatrics, July 2004 114(1):210–16. Promoting Optimal Child Development from Birth to 79 Three Years (New York: The Commonwealth Fund, Children’s Health, The Nation’s Wealth: Assessing and Sept. 2002); Commonwealth Fund Completed Improving Child Health (Washington, D.C.: Grant Memo #990567. National Academies Press, 2004); B. Brown, M. 88 Weitzman et al., Early Child Development in Social Commonwealth Fund grant and Completed Grant Context: A Chartbook (New York: The Memo #20060127. Commonwealth Fund, Child Trends, and Center for 89 Child Health Research, 2004); Commonwealth Commonwealth Fund grant #20080113 and Sices Fund grant #20030340. interview, Aug. 12, 2011; and Commonwealth Fund grant #20060222. 80 E. L. Schor, “Child Development and Preventive 90 Care,” presentation at American Academy of Bergman interview, Aug. 1, 2011. Pediatrics annual meeting, Nov. 2002. 91 Commonwealth Fund grant #20040370. 81 Berry, Krutz, Langner et al., “Jump-Starting 92 Commonwealth Fund grant #20070072; and Collaboration,” 2008. Bergman interview, Aug. 1, 2011. 82 Commonwealth Fund grants #20040018, 93 Commonwealth Fund grant #20050338. #20040022, and #20040033; final ABCD request for proposals, May 2003; Commonwealth Fund 94 Commonwealth Fund grant #20060375. grants and Completed Grant Memos #20040681 95 and #20050531. Commonwealth Fund Completed Grant Memo #20040151; and Interview with V. Fan Tait, M.D., 83 Final ABCD request for proposals, May 2003; F.A.A.P., associate executive director, American Commonwealth Fund Grants and Completed Grant Academy of Pediatrics, Aug. 12, 2011. Memos #20040681 and #20050531; Kaye interview, 96 July 29, 2011; N. Kaye, Improving the Delivery of Commonwealth Fund grant #20030295. Health Care that Supports Young Children’s Healthy 97 N. Kaye and J. May, Findings from the ABCD Mental Development: Early Accomplishments and Screening Academy: State Policy Improvements that Lessons Learned from a Five-State Consortium Support Effective Identification of Children at Risk for (Portland, Maine, and New York: National Academy Developmental Delay (Portland, Maine: National for State Health Policy and The Commonwealth Academy for State Health Policy, March 2009). Fund, April 2006); Commonwealth Fund Completed Grant Memos #20000419, #20010387, 98 Interview with Cynthia S. Minkovitz, M.D., M.P.P., and #20030454. professor, Department of Pediatrics, Johns Hopkins 84 University School of Medicine, Aug. 29, 2011; Interview with Edward L. Schor, M.D., senior vice Interview with Susmita Pati, M.D., M.P.H., division president for programs and partnerships, Lucile chief, General Pediatrics, Stony Brook University Packard Foundation for Children’s Health, and for- Medical Center, Aug. 12, 2011; and Sices interview, mer vice president, The Commonwealth Fund, July Aug. 12, 2011. 6, 2011. 99 85 Final report for Commonwealth Fund grant For a history of the specialty, see R. J. Haggerty and #20040634. S. B. Friedman, “History of Developmental– Behavioral Pediatrics,” Journal of Developmental and 100 Commonwealth Fund grant #20030421; Johnson Behavioral Pediatrics, Feb. 2003 24(1 Suppl.):S1– interview, July 29, 2011; Kaye interview, July 29, S17. 2011. 46 A HISTORY OF THE COMMONWEALTH FUND’S CHILD DEVELOPMENT AND PREVENTIVE CARE PROGRAM 101 107 Commonwealth Fund grant and Completed Grant Commonwealth Fund grant and Completed Grant Memo #20031304; Interview with Deborah Memo #20010362. Saunders, chief, Bureau of Maternal and Child 108 Health, State of Illinois, Aug. 26, 2011, and Commonwealth Fund grant and Completed Grant Commonwealth Fund Completed Grant Memo Memo #20080174. #2005053; and Commonwealth Fund Completed 109 Commonwealth Fund grant #20020769; Grant Memo #20031304. Commonwealth Fund grant #20050416; and 102 Schor interview, Dec. 8, 2011. Interview with Judith Shaw, Ed.D., M.P.H., R.N., research associate professor, Department of 103 Commonwealth Fund Completed Grant Memo Pediatrics, University of Vermont College of #20040151; Tait interview, Aug. 12, 2011; L. M. Medicine, Sept. 6, 2011. Olson, J. L. Tanner, M. T. Stein et al., “Well-Child 110 Care: Looking Back, Looking Forward,” Pediatric Commonwealth Fund grant and Completed Grant Annals, March 2008 37(3):143–51. Memo #20040443. 111 104 “Developmental Surveillance and Screening of Schor, “Measurable Development in Parents,” 1997. Infants,” 2001; “Identifying Infants and Young 112 Commonwealth Fund grant and Completed Grant Children with Developmental Disorders in the Memo #20060114. Medical Home: An Algorithm for Developmental Surveillance,” Pediatrics, July 2006 118(1):405–20; 113 Interview with Sarah H. Scholle, Dr.P.H., vice presi- Bright Futures, 3rd edition (Elk Grove Village, Ill.: dent of research and analysis, National Committee American Academy of Pediatrics, 2008); Dworkin for Quality Assurance, Aug. 11, 2011; Commonwealth interview, Sept. 12, 2011; and Schor interview, Dec. Fund grant and Completed Grant Memo #20070768; 8, 2011. S. H. Scholle, S. L. Sampsel, N. E. P. Davis et al., 105 Quality of Child Health Care: Expanding the Scope J. L. Tanner, M. T. Stein, L. M. Olson et al., and Flexibility of Measurement Approaches (New York: “Reflections on Well-Child Care Practice: A The Commonwealth Fund, May 2009). National Study of Pediatric Clinicians,” Pediatrics, Sept. 2009 124(3):849–57; L. Radecki, L. M. Olson, 114 National Improvement Partnership Network, “What M. P. Frintner et al., “What Do Families Want from Are Improvement Partnerships?” (Burlington, Vt.: Well-Child Care? Including Parents in the Vermont Child Health Improvement Program, Rethinking Discussion,” Pediatrics, Sept. 2009 University of Vermont College of Medicine, 2011), 124(3):858–65; Interview with Martin T. Stein, http://www.uvm.edu/medicine/vchip/ M.D., professor, Department of Pediatrics, documents/2011VCHIPINSERT_IP.pdf.; University of California, San Diego School of Commonwealth Fund grant/Completed Grant Medicine, Aug. 11, 2011; Commonwealth Fund Memo #20090085; Shaw interview, Sept. 6, 2011. Completed Grant Memo #20050338; L. R. First, 115 “How ‘Well’ Are Our Well-Child Care Visits?” Commonwealth Fund grants #20030504 and Pediatrics blog, Aug. 24, 2009, http://pediatricsblog. #20060134; and T. Krissik, H. T. Ireys, A. R. Markus blogspot.com/2009_08_01_archive.html; L. Radecki, et al., Monitoring and Assessing the Use of External N. Sand-Loud, K. G. O’Connor et al., “Trends in Quality Review Organizations to Improve Services for the Use of Standardized Tools for Developmental Young Children: A Toolkit for State Medicaid Agencies Screening in Early Childhood: 2002–2009,” (New York: The Commonwealth Fund, 2008). Pediatrics, July 2011 128(1):14–19. 116 Commonwealth Fund grant #20070190; and 106 Commonwealth Fund grant and Completed Grant Commonwealth Fund grant #20070435. Memo #20060221; Interview with Robert D. Sege, M.D., Ph.D., director, Division of Family and Child Advocacy, Boston Medical Center, Sept. 1, 2011; and R. D. Sege and E. De Vos, Evidence-Based Health Care for Children: What Are We Missing? (New York: The Commonwealth Fund, April 2010). www.commonwealthfund.org 47 117 127 “NQF Releases Updated Child Quality Health Interview with John E. Craig, Jr., executive vice Measures,” press release, Aug. 15, 2011; Data president and COO, The Commonwealth Fund, Resource Center for Child and Adolescent Health, Sept. 22, 2011; and Commonwealth Fund “Child Health and Health Care Quality Measures Vulnerable Populations program description, http:// from the NSCH and NS-CSHCN Endorsed for www.commonwealthfund.org/Program-Areas/ Use by the National Quality Forum,” (Washington, Delivery-System-Innovation-and-Improvement/ D.C.: Maternal and Child Health Bureau, Oct. Vulnerable-Populations.aspx. 2011), http://childhealthdata.org/docs/drc/endorsed- 128 nqf-measures-1-pager-10-13-11-pdf.pdf; C. DeNavas-Walt, B. D. Proctor, and J. C. Smith, Commonwealth Fund grant #20110159—CHIPRA Income, Poverty, and Health Insurance Coverage in the required that an initial core set of children’s health United States: 2010 (Washington, D.C.: U.S. Bureau care quality measures for voluntary use by Medicaid of the Census, Sept. 2011), Report P60, n. 238, and CHIP programs be posted for public comment Table B-2, pp. 68–73; Children’s Defense Fund, by Jan. 1, 2010; Commonwealth Fund grant “Number and Percentage of Uninsured Children in #20090494; and “The Assuring Better Child Health Each State,” (online map), http://www.childrensde- and Development (ABCD) Program” (internal pro- fense.org/policy-priorities/childrens-health/unin- gram update, on file with The Commonwealth sured-children/uninsured-children-state.html; R. Fund). Brame, M. G. Turner, R. Paternoster et al., “Cumulative Prevalence of Arrest from Ages 8 to 23 118 Commonwealth Fund Completed Grant Memo in a National Sample,” Pediatrics, Jan. 2012 #20050531. 129(1):21–27; and M. D. Kogan, P. W. Newacheck, 119 S. J. Blumberg et al., “Underinsurance Among Commonwealth Fund grant #20040548. Children in the United States,” New England Journal 120 R. C. Antonelli, J. W. McAllister, and J. Popp, of Medicine, Aug. 26, 2010 363(9):841–51. Making Care Coordination a Critical Component of the 129 Markel and Golden, “Successes and Missed Pediatric Health System: A Multidisciplinary Opportunities,” 2005; Willis interview, Sept. 16, Framework (New York: The Commonwealth Fund, 2011; Halfon interview, July 29, 2011; and First May 2009); Commonwealth Fund grant #20070632; Focus, Improving Children’s Health and Well-Being by and Interview with Richard C. Antonelli, M.D., Integrating Children’s Programs, http://www.firstfo- M.S., medical director, Children’s Hospital (Boston), cus.net/library/reports/improving- Sept. 6, 2011. children%E2%80%99s-health-and-well-being-by- 121 Medical Home Initiatives for Children with Special integrating-children%E2%80%99s-programs. Needs Project Advisory Committee, American 130 Willis interview, Sept. 16, 2011. Academy of Pediatrics, “The Medical Home,” 131 Pediatrics, July 2002 110(1 Pt. 1):184–86. Olson, Inkelas, Halfon et al., “Overview of the 122 Content of Health Supervision for Young Children,” Commonwealth Fund grant #20090425. 2004. 123 Dworkin interview, Sept. 12, 2011; Interview with 132 H. R. Clinton, It Takes a Village and Other Lessons Amy Fine, M.P.H., child public health consultant, Children Teach Us (New York: Simon & Schuster, Aug. 4, 2011; Commonwealth Fund grant 1996); R. Santorum, It Takes a Family: Conservatism #20040548; Commonwealth Fund grant #20080334; and the Common Good (Wilmington, Del.: and Commonwealth Fund grant #20080335. Intercollegiate Studies Institute, 2005). 124 Dworkin interview, Sept. 12, 2011; and Commonwealth Fund grant #20080334. 125 “The Assuring Better Child Health and Development (ABCD) Program” (internal program update, on file with The Commonwealth Fund). 126 Ibid. 48 A HISTORY OF THE COMMONWEALTH FUND’S CHILD DEVELOPMENT AND PREVENTIVE CARE PROGRAM www.commonwealthfund.org