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E Clinical Health Care Practice and Community Building: Addressing Racial Disparities in Healthy Child Development Charles H. Bruner, Ph.D., and Edward L. Schor, M.D. INTRODUCTION AND SYNOPSIS Pronounced disparities exist by race and ethnicity in child and adoles- cent health across a range of health conditions and access to health services. Addressing these child health disparities is particularly important, as child- hood and adolescence establish health trajectories that extend throughout a person’s life span.1 These disparities in child health conditions by race and ethnicity also co- occur with other disparities in child outcomes—from educational achieve- ment to child welfare and justice system involvement. This high degree of co-occurrence warrants attention to identifying some common etiology for these disparities.2 Clearly, good child health involves • imely and appropriate (and therefore culturally sensitive) medical t care for illness and injury, and screening to detect and treat congen- ital abnormalities and chronic as well as acute health conditions; • good hygiene, nutrition, and exercise; • table and nurturing families who provide constant and consistent s supervision; • safe environments that do not contain toxic elements;3 • ocial institutions that reinforce healthy lifestyles and behaviors s and provide opportunities for growth and development; and • ocial and psychological supports that foster resiliency and positive s identity.4 87

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88 FOCUSING ON CHILDREN’S HEALTH Healthy child development that results in educational and social success similarly involves the same set of points, particularly when social institu- tions are defined to include schools and their educational components. These points provide the basis for that common etiology to achieving both good child health and healthy child development. In the United States, the first two points on this list generally are con- sidered to be subject to influence by the health care system through the primary pediatric practitioner. The last four points generally are considered to be primarily influenced by the child’s family and community and their network of supports, with some role from public health on environmental health conditions, a role for schools for educational development, and a role for law enforcement for public safety.5 This paper argues that such distinctions and segmentations of respon- sibility can miss opportunities for addressing child health disparities by race and ethnicity. In fact, child health practitioners6 and their institutions can play a contributing role in supporting child health and healthy child development across all these points. As an example, Figure 3-2 shows that when the pediatric practitioner’s role is broadly defined and practiced, the set of healthy child development outcomes that should be at least partially addressed through well-child care for young children involves identifying potential concerns on all these points and at least beginning to address them.7 Defining child health and the responsibilities of the health care com- munity broadly is particularly important in distressed or vulnerable neigh- borhoods, where child health outcomes are poorest and where children of color disproportionately live.8 While there is a limited clinical research base regarding the effectiveness of more holistic pediatric approaches to healthy child development, there is also little within current research to indicate an inability to develop such pediatric practice.9 Further, there are promising programs with evidence of success in improving health outcomes and reduc- ing disparities that deserve attention and support, particularly as they con- nect children and families to other community-building activities. Two such programs—Help Me Grow in Connecticut and the Eastside Partnership for Families in Richmond, Virginia—are described as examples of exemplary efforts to combine clinical practices with community-building ones. Link- ing clinical practice with community-building efforts offers promise in both improving child health and children’s healthy development, but requires explicit attention to the role that child health practitioners should play in supporting other organizations in leading community-building efforts. Expanding the knowledge and practice base on effective strategies that combine clinical and community-building strategies also requires evalua- tion approaches that extend beyond traditional clinical trials as ways to attribute causality and measure impact.

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89 APPENDIX E DISPARITIES IN HEALTHY CHILD DEVELOPMENT BY RACE AND ETHNICITY There is a large, although fragmented, array of data that shows pro- found disparities in child health outcomes, as well as access to health services, by race and ethnicity. These disparities start even before birth and extend through adolescence and into adulthood. That disparities dif- fer among different racial and ethnic groups depending upon the child outcome is also an important point in understanding the origins and deter- minants of disparity. Figure 3-1 provides prevalence data on several child and adolescent health measures, broken out for the three largest racial and ethnic groupings in America—white non-Hispanic, African American, and Hispanic (see Table E-1 for a more extensive list of child health and other outcomes by these population groups). Disparities also exist for Native American children and, on some measures, for Asian and Pacific Islander children, but these are not shown in this figure. Figure 3-1 further provides prevalence data on measures of educational and social development and on family factors and characteristics. As Figure 3-1 indicates, there are consistent and marked disparities in child health outcomes and access to child health services, with African American children faring far worse than white, non-Hispanic children on almost every measure. With the exception of birth outcomes and child and adolescent mortality, Hispanic children also fare much worse on most mea- sures than white, non-Hispanic children.10 As has been frequently noted, the African American infant mortality rate is equivalent to the rates in many developing countries. Most other child health indicators among African American and Hispanic children show similar degrees of disparity when compared with White, non-Hispanic children. Table E-1 shows that these child health disparities are similar in size to those found for educational and social outcomes. In other words, dispari- ties related to healthy child development and school success are equally profound to those related to specific health conditions. Finally, the family and community factors for African American and Hispanic children are very different from those for white, non-Hispanic children. In respect to wealth (and therefore the ability to invest in one’s future) and geographic location, the differences are even more pronounced across race and ethnic- ity than for most of the health and healthy development outcomes experi- enced by children. In 2000, for instance, median household net worth for white non-Hispanic households was $79,400, compared with $7,500 for African American and $9,750 for Hispanic households—a 10-fold differ- ence, much greater than when annual income is compared. (See Table E-1 for more information.)11 Overall, this collection of data points to the importance of looking

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TABLE E-1 Child Health Disparities in Context: Selected Indicators of Child Health, Healthy Development, and 90 Family and Community Child Health Indicators White NH Black NH Hispanic Source Infant mortality (1,000 live births) 5.7 13.8 5.6 A Low birth weight 7.2% 13.4% 6.8% A Elevated blood-lead levels 2.6% 4.3% 3.1% B Current asthma prevalence (under 18) 8.0% 13.0% 8.6% C New AIDS cases 13–17/100,000 .1 4.0 .5 D Child (1–14) death rate/100,000 19 29 18 A Teen death (15–19) rate/100,000 63 81 64 A 6–11 Overweight 11.8% 19.5% 23.7% E 19–29 Overweight 12.7% 23.6% 23.4% E Child health indicators No health insurance coverage 0–17 6.4% 6.9% 19.5% D No reported specific source of care 0–17 3.3% 5.8% 24.1% D Late/no entry into prenatal care 11.0% 24.1% 23.5% D No dental visit (2–17) 41.4% 63.2% 63.3% D Immunizations not complete (19–35 mo) 16.7% 25.5% 21.3% D Asthma hospital admissions (0–4)/100,000 15.3 120.0 54.0 D Hospital admin ped. gastrointes. (0–17)/100,000 81.7 84.1 108.9 D Healthy Child Development Indicators/Education Below basic 4th-grade reading proficiency 22% 54% 50% F Below basic 8th-grade math proficiency 18% 53% 45% F 15–24 dropout rates 6.0% 10.4% 22.4% G Noncompletion of high school 24.1% 48.8% 46.8% H

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Healthy Child Development—Other Youth (16–19) not in school or working 6% 12% 12% A Foster care placement (0–17)/1,000 4.9 15.8 6.5 I Males (20–24) in state/federal prison/1,000 9.5 63.4 24.9 J Family and Community Indicators Children in poverty 11% 35% 29% A No parent employed year-round 27% 51% 39% A Children in single-parent families 23% 65% 36% A Teen (15–19) birth rate/1,000 females 2.6% 6.3% 8.3% A Living in high-risk neighborhood 1.7% 20.3% 25.3% K Median household net worth $74,900 $7,500 $9,750 L Child Population 2000 population 44,027,087 10,880,696 12,342,259 Percentage of total child population 60.9% 15.1% 17.1% Projected 2020 population 42,459,109 12,392,102 18,923,344 Percentage of total 52.9% 15.4% 23.6% SOURCES: A. Annie E. Casey Foundation. 2007. 2007 kids count data book: State profiles of child well-being. Baltimore, MD: Annie E. Casey Foundation. B. Centers for Disease Control. 2005. Blood lead levels—United States, 1999-2002. Morbidity and Mortality Weekly Report 54(20):513-516. http://www.cdc.gov/mmwr/preview/ mmwrhtml/mm5420a.htm. C. Centers for Disease Control. 2006. National Health Interiew Surey data—200 data. Table 4-1. http://www.cdc.gov/asthma/nhis/default. htm. 9

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TABLE E-1 Continued 92 D. Agency for Healthcare Research and Quality. 2006. National Health Care Disparities Report. Appendix D: Data Tables. http://www.ahrq. gov/qual/nhdr06/index.html#MCH. E. Weight Awareness. 2007. Ethnicities and childhood oerweight and obesity problems. http:/www.weightawareness.com/topics/doc. xml?doc_id=1179&am. F. National Center for Education Statistics. 2007. National Assessment of Educational Progress scores—2007. http://nationsreportcard.gov. G. National Center for Education Statistics. 2005. Status dropout rates for –2 year-olds, October 200. http://nces. ed.gov/pubs2007/dropout05. H. Urban Institute. 2004. Who graduates: Who doesn’t. http://www.urban.org/Uploaded PDF/410934__WhoGraduates.pdf. I. Adoption and Foster Care Analysis and Reporting System. 2004–2005. Prealence data by race. http://www.acf.gov/programs/cb/stats__ research/afcars/tar/report13.htm. This prevalence data was divided by census data on the number of children of different ethnicities to come up with percentages. J. Bureau of Justice Statistics. 2005. Prisoners in 200. http://ojp.usdoj.gov/bjs/pub/pdf/p05.pdf. K. Bruner, C., M. Wright, and S. Tirmizi. 2007. Village building and school readiness: Closing opportunity gaps in a dierse society. Des Moines, IA: State Early Childhood Policy Technical Assistance Network. L. L. Orzechowski, S., and P. Sepielli. 2003. Net worth and asset ownership of households: 998 and 2000. Current population reports. Washington, DC: U.S. Census. Pp. 70-88.

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9 APPENDIX E for underlying causal underpinnings for disparities that, for child health outcomes, extends beyond health insurance coverage and clinical care. The size of the disparities on health and healthy development measures can- not be attributed to health coverage alone. This involves exploring family, social institution, and community factors. The specific issue of geography, or place, is discussed in the next section of this paper. PLACE AS AN IMPORTANT ELEMENT IN CHILD HEALTH DISPARITIES The bank robber Willie Sutton is quoted as saying that he robbed banks because that was where the money was. Similarly, improving child health and reducing health disparities by race and ethnicity involve strategies that are delivered at the community level, where families can go to local facilities for their children’s health needs. When children are very young, family time spent together and associations are much more likely to be geographically bound to a physical neighborhood. Research findings on neighborhood effects on child and family outcomes independent of individual child and family characteristics are mixed.12 However, it is clear that place matters in developing strategies to reduce health disparities, if only because children of color, and particularly children of color with other economic and social factors that can contribute to poor health outcomes, disproportionately reside in certain neighborhoods and communities. This is very clear from an analysis of 2000 census data of all 65,000 census tracts in the United States on 10 factors associated with their “child- raising vulnerability.”13 The 10 factors available from the census data were selected to provide indicators related to education, social structure, employ- ment, and wealth. Each tract was categorized according to the number of factors upon which its data showed a high degree of vulnerability (one stan- dard deviation or more from the mean). Figure 3-3 provides information that shows differences across census tracts with the presence of different numbers of vulnerability factors. As Figure 3-3 shows, with the exception of wage income, the difference between census tracts with no risk factors and those with six or more risk factors are profound, with rates from two-and-one-quarter to nine times greater in the high-vulnerability tracts. The experience of children growing up in these high-vulnerability tracts is almost certainly very different than the experience of children growing up in those with little or no vulnerabil- ity. Except for the South, these high-vulnerability tracts are concentrated in metropolitan, largely inner-city, neighborhoods, with the highest concentra- tions of these in the Northeast. While pointing to the importance of place-based approaches to improv- ing child health and healthy child development, particularly important for

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9 FOCUSING ON CHILDREN’S HEALTH this report is the fact that these high vulnerability census tracts also are very disproportionately populated by persons of color. Table E-2 shows the racial and ethnic composition for census tracts with different numbers of vulnerability factors. As Table E-2 indicates, while 83.2 percent of the persons residing in tracts with no vulnerability factors are white, non-Hispanic, only 17.6 per- cent of the persons residing in tracts with six or more vulnerability factors are white, non-Hispanic. As a percentage of their overall population in the United States, only 1.7 percent of white, non-Hispanics in the country live in the highest vulnerability census tracts (six or more vulnerability factors), while 20.3 percent of blacks and 25.3 percent of Hispanics live in those tracts. Only 7.7 percent of white, non-Hispanics live in census tracts with three or more vulnerability factors, while 46.4 percent of blacks and 50.3 percent of Hispanics live in those neighborhoods. In short, successful efforts to reduce child health and other disparities by race and ethnicity will have to make substantial gains within these high- vulnerability census tracts, simply due to the very substantial percentage of the child population of color that resides in those tracts. In addition, however, available evidence also shows that the health and healthy development child outcomes are the poorest for both African Amer- ican and Hispanic children who live within these census tracts.14 Developing successful efforts in these tracts and neighborhoods likely requires consid- erable attention to addressing environmental and neighborhood,15 as well as individual and family, conditions that exist there, which also have been referred to as “toxic stress” that harms brain development in children.16 Neighborhood conditions include physical indicators such as levels of safety and exposure to environmental toxins, but also role models and social ties and connections that look out for children. Individual and family condi- tions include economic and educational conditions, but also levels of stress and child nurturing patterns. Conceptually, these factors interact as well, as neighborhood conditions contribute to or mitigate against family stress and provide or fail to provide nurturing activities and modeling for parents. TOWARD A THEORY OF CHANGE IN ADDRESSING CHILD HEALTH DISPARITIES The size and consistency of the disparities shown in Figure 3-1 suggest that there are at least some common underlying elements that contribute to and will need to be addressed in order to reduce or eliminate child health and healthy development disparities. The information in Table E-2 and Figure 3-3 suggests that neighborhood-based, as well as individual-based, strategies may need to be developed to address these disparities, at least in high-child vulnerability neighborhoods.

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TABLE E-2 Racial Composition of Census Tracts by Child-Raising Vulnerability Status All No 1–2 3–5 6–10 Census Vulnerability Vulnerability Vulnerability Vulnerability Racial Composition Tracts Factors Factors Factors Factors % White non-Hispanic 69.8 83.2 67.0 37.4 17.6 % Black 12.5 6.2 13.4 28.2 38.0 % Asian 4.1 3.7 5.1 4.4 3.4 % Hispanic 12.5 6.1 13.3 28.1 39.4 % Am. Indian/Native Alaskan 0.8 0.5 0.9 1.4 1.2 % Native Hawaiian and other PI 0.2 0.2 0.2 0.2 0.2 % Other 0.2 0.1 0.2 0.2 0.2 Total 100 100 100 100 100 Proportion of race in tract % White non-Hispanic 100 69.6 22.7 6.0 1.7 % Black 100 29.1 25.2 25.4 20.3 % Asian 100 52.6 29.7 12.3 5.5 % Hispanic 100 28.6 25.0 25.0 25.3 % Am. Indian/Native Alaskan 100 40.3 27.6 21.0 11.1 % Native Hawaiian and other PI 100 50.6 29.9 13.4 6.1 % Other 100 47.6 26.6 15.4 10.4 SOURCE: Census data, 2000. 9

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96 FOCUSING ON CHILDREN’S HEALTH Increasingly, initiatives designed to produce community-level changes in child and family outcomes have adopted a “theory of change” approach to evaluation.17 The purpose of applying a theory of change is to identify assumptions that underlie the belief that the strategies developed will lead to producing community-level changes in the desired child and family outcomes. An evaluation design can then be developed to test the different assumptions upon which the strategies are based. As stated in the introduction, good child health and healthy child development involves • imely and appropriate (and therefore culturally sensitive) medical t care for illness and injury and screening to detect and treat congeni- tal abnormalities and chronic as well as acute health conditions; • good hygiene, nutrition, and exercise; • table and nurturing families who provide constant and consistent s supervision; • safe environments that do not contain toxic elements; • ocial institutions that reinforce healthy lifestyles and behaviors s and provide opportunities for growth and development; and • ocial and psychological supports that foster resiliency and positive s identity. These points can form the basis for a theory of change, as everything on this list is malleable to some degree.18 Clearly, most children receive most of what they need most of the time to produce good, if not optimal, health and healthy development outcomes. The issue is to identify where children are not receiving what they need and then develop strategies to ensure they receive it. Box E-1 provides the assumptions for such a theory of change to address these disparities. Clearly, there is a research as well as a theoretical (and common sense) base for each of the assumptions in this theory of change. There is substan- tial research on assumptions one and two that show there are a set of inter- related underlying factors beyond the child’s own constitution and genetic make-up that contribute to good child health and healthy development. These extend from clinical research on the impact of medical interventions, to anthropological and sociological research on the role of the family in child development, to resiliency and risk and protective factor research on the importance of social institutions and social and psychological supports to healthy development.19 Further, all these factors are malleable to some extent. There also is substantial evidence that while child health insurance cov- erage and the provision of clinical pediatric services play a role in improving child health and reducing health disparities, social and environmental fac-

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97 APPENDIX E BOX E-1 Theory of Change Set of Testable Assumptions for Strengthening Pediatric Practices to Reduce Disparities in Healthy Child Development 1. Pronounced, but malleable, disparities in child health exist by race/ethnicity, which correspond with similar pronounced disparities in educational achieve- ment, justice system involvement, and income and wealth. 2. These disparities are not separate and distinct, but are interconnected, requir- ing strategies for addressing them that need to recognize and address some of their common underlying causes. 3. Because it is almost universally used by young children, child health care practice offers an important entry point that can be used to identify and begin to address these underlying causes. 4. This requires a more holistic and culturally congruent approach to primary, preventive, and developmental pediatric care than is currently in practice from a clinical perspective, coupled with effective referrals to other services and supports at the community level that contribute to community building. 5. Developing such strategies is particularly important in distressed neighbor- hoods, where children of color disproportionately reside and where environ- mental factors most threaten child health and development, with actions taken to increase the social capital and reduce the environmental risk within those neighborhoods. 6. The result of developing such strategies will be to significantly improve both specific measures of child health and to improve broader measures of healthy child development. tors weigh much more heavily in producing current disparities.20 Further, although often not considered as an objective or goal (i.e., the dependent variable in a regression equation), there is at least case study evidence that child health insurance coverage and clinical pediatric services can play a role in improving healthy child development and educational and social outcomes as well as specific health outcomes.21 On the third assumption, which is the lynchpin assumption to interven- tions that involve clinical practice changes, survey research shows that the pediatric practitioner is often the only professional who sees children and their families and is also in a position to assess health and development. As Figure E-1 shows, nearly 90 percent of all young children are seen by a primary care practitioner annually, but fewer than one-third are in any form of formal child care or preschool arrangement. Additionally, there is some research that families do listen to what pediatric practitioners recommend and that anticipatory guidance can affect family practices both on health-

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02 FOCUSING ON CHILDREN’S HEALTH brochures describing the program and prescription pads for physicians to make referrals to Help Me Grow care coordinators, when warranted. Criti- cally important, Help Me Grow provides an avenue for practitioners to do something when a potential need is identified. Help Me Grow Care Coordinators The second core component of Help Me Grow is the care coordinator, who follows up on practitioner referrals or direct family contacts made upon the practitioner’s recommendation. Care coordinators talk by phone with parents to further determine child and parental concerns and needs, and then draw upon a continuously developing database of community pro- viders to match parents with services they may need. The federal Individu- als with Disabilities Education Act (IDEA) and its early intervention (Part C) program represents one important referral and connection, but many children who may not be eligible for Part C because of age or identified concerns still benefit from developmental health services. On average, care coordinators make seven to eight calls following contact with the practi- tioner and the family in finding a service match and scheduling a visit or meeting (the amount of time in locating appropriate services is one reason that pediatric practitioners themselves do not generally do this follow-up work outside their established connections with specialists within the medi- cal community). While referrals may be made for additional professional services, many concerns relate to parenting education and support services, including peer support and help. Help Me Grow has found that, in most instances, there are services that parents can access that can provide real help, but finding them for an individual family takes initiative and time. The care coordinators also play the important role of providing information back to the pediatric practitioner on the services that have been matched (so practitioners can follow-up on the next pediatric visit), and conducting fol- low-up calls with families and programs to ensure they have actually made connections. The care coordinator’s work extends beyond simply finding a referral source to scheduling a visit and following up on that visit. Child Deelopment Community Liaisons The third core component of Help Me Grow is the child develop- ment community liaison, who works closely with the care coordinators in identifying and matching community services. Liaisons work to con- tinuously build the comprehensive community resources database that care coordinators use in their work; they also serve as consultants to the care coordinators on specific cases, in researching for resources that can address specific needs. In addition, the liaisons are on-the-ground net -

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0 APPENDIX E workers across the service-providing community, hosting regular break- fasts or other meetings for community providers to receive guidance and information on selected developmental issues, broaden the overall referral system, and strengthen the networking and relationships across the service community. Schematically, the Help Me Grow model is shown in Figure 3-5. Help Me Grow also has an evaluation and continuous learning component, one that is considered fundamental to its success. Initial findings from Help Me Grow have been the subject of a special supplement of the Journal of Deelopmental & Behaioral Pediatrics, and these results tend to confirm the validity of assumptions three and four.37 Help Me Grow has increased both the identification of young children with developmental problems and their connections to community resources and supports. It has increased child health care providers’ understanding and use of other professional services such as Part C and diagnoses and follow- up clinical services for specific mental and developmental health conditions, with at least one follow-up visit achieved for more than 90 percent of all children, according to the most recent report.38 In addition, it has created a bridge for addressing a variety of more general parental issues and concerns that can affect children’s healthy development. Approximately one-quarter of the referrals to care coordinators relate to issues of parenting stress, iso- lation, or lack of parenting knowledge, or to issues of child discipline and behavior. Approximately the same percentage of follow-up services young children and their families secure through Help Me Grow involve parent- ing education, parent support groups, and other community programs for parents and their children. Many of the connections Help Me Grow makes are with programs that do not charge fees and involve nonprofessional resources that represent social institutional contacts, reinforcing healthy lifestyles and fostering both child and parental resiliency. Help Me Grow also makes cultural and language connections when locating community resources that families and their young children will feel comfortable with and validated by. It is publicly funded through the state of Connecticut. East End Partnerships with Families The East End Partnership with Families in Richmond, Virginia, is another approach to improving children’s healthy development, with the Vernon J. Harris Community Center serving as an anchor partner. The Vernon J. Harris Community Center serves as a safety net provider in offer- ing high-quality medical services to children and families who otherwise could not afford such care. At the same time, the center takes a “whole child and whole family” approach to supporting health, recognizing that ensuring good health involves meeting a range of family needs—including

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0 FOCUSING ON CHILDREN’S HEALTH such varied needs as securing housing or rent assistance, supporting rela- tives providing child care, and providing summer day camp opportunities for youth. The East End Partnership includes 10 community partner organizations that have come to see their role as creating resources and opportunities that children and their families need for their health and development. The Parent Resource Network is a critical partner, a parent-led organization committed to ensuring that family voices in design and family involvement in implementation is a core aspect of program development. Central to the East End Partnership with Families is a comprehensive assessment and client-tracking system that involves common intake and referral at the Vernon J. Harris Community Center, coupled with care coordination for the most vulnerable families that helps them to navigate the array of community agencies they deal with that are designed to provide them with needed services. The comprehensive assessment not only identifies needs but also helps ensure that families know about and can become involved in a wide range of services, including • edical care, dental services, and community outreach and assess- m ment services through the Vernon J. Harris Health Center; • parent resource network, including advocacy training and sup- a port, peer networking, and a variety of support groups, including a kinship care support group, a single parents support group, and a teen “girl talk” group; • hild guidance services, involving community-based mental health, c school-based mental health, and preventive mental health services; and • variety of community programs developed through the partner- a ship’s work and partner leadership, based upon needs identified by parents and youth and specific opportunities for securing needed resources identified by the partnership and its members, including such activities as youth drug abuse counseling, teen grief counsel- ing, “raising a reader” programming, obesity prevention program- ming, and male mentoring and fatherhood programming. The starting point for the connection with families is the Vernon J. Harris Health Center and its reputation and standing in the community as a high-quality and culturally responsive center for providing needed health services. There are many community health centers with such reputations in their communities, and many have also developed additional services and community connections similar to those created in Richmond through the East End Partnership with Families. They have done so because their

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0 APPENDIX E close connections to the children and families they serve have brought such needs and opportunities to their attention, and they have supported resident leaders to advocate for needed services. The Vernon J. Harris Health Center and the East End Partnership with Families is highlighted as an exemplary but by no means unique effort among community health centers. It is mature and sophisticated, continu- ously looking for ways to expand the services available to members of its community, often through forging ties and partnerships within a predomi- nantly minority community within a larger political jurisdiction. As a case in point, the East End Partnership with Families provides sub- stantial evidence for the validity of the fifth assumption—the importance of working within distressed communities—as it has been successful in build- ing social capital, fostering resiliency, and creating a more favorable overall environment for healthy child development within the community. The growth of the East End Partnership with Families has not been by detailed blueprint; its evolution has been both organic and entrepreneurial. The partnership’s successes can be seen in its ability to identify needs and secure resources, but that success truly rests on the infrastructure, support, and leadership it provides. Creating a critical mass of programs, activities, and opportunities that are sufficiently diverse to attract and engage different constituencies may be more important than the provision of specific, dis- crete professional services (however much they can be tied to clinical need) to improving healthy child development in these neighborhoods.39 This ability to activate and motivate its community relates to assump- tions, or testable propositions, under the theory of change. While the Ver- non J. Harris Community Center and East End Partnership with Families exist in various degrees throughout the country, using this as a model for reducing disparities assumes that there are intentional activities and efforts that can replicate the evolution of the East End Partnership with Families and its level of activity and community engagement. At a minimum, this may involve investing in champions rather than programs. It also assumes that a critical mass of activity will, in fact, change community social capital and community resiliency to produce community improvements related to healthy child development that are more than the sum of individual program parts. At a minimum, testing this assumption requires research methodologies that extend beyond randomized controlled trials, particu- larly as assignment to a treatment or control group would violate the fun- damental, inclusive approach being taken to producing changes in healthy child development.

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06 FOCUSING ON CHILDREN’S HEALTH CONCLUSION, NEXT STEPS, AND APPROPRIATE METHODOLOGIES This paper has sought to make the case for changed pediatric clinical practices—particularly around well-child care—to help address disparities in child health and healthy child development by race and ethnicity. The profound disparities in both child health and healthy child development by race and ethnicity cannot be expected to simply disappear without concerted and intentional efforts to address them. They have proved to be persistent in American society and require significant changes in order to address them effectively. This paper also has asserted that the clinical health community can play an essential, but by no means total or independent, role in reducing these disparities. This clinical role requires both changing clinical health practices (to be more holistic and developmental) and changing ways that clinical practices connect to community (particularly to make effective referrals of patients to community resources and supports). As case illustrations, the Help Me Grow and East End Partnership with Families examples provide illustrations of organic and holistic approaches to improving healthy child development that start with clinical practice but extend into their communities to produce improvements in healthy child development. Clearly, there is not a current research base that provides definitive results for efforts that combine individually focused health strategies with community-building efforts that strengthen healthy outcomes on a popu- lation level. There is not an established set of protocols and procedures to achieve such ends that can guide practitioners. There is not a research base that has begun to establish the relative size of the effects in reducing disparities that such combined or coordinated efforts might be expected to produce. Compared with the amount of funding expended on research on clinical procedures and drug therapies, the research funding for evaluating such approaches has been miniscule at best. Yet, achieving good outcomes for children requires that current clinical care be improved, and that part of that improvement involves assuring that children and families have ready accesses to a variety of community support services. More emphasis needs to be provided for this work, which also involves developing evaluation approaches that are rigorous, but that involve differ- ent methodologies than randomized controlled trials for attributing causal- ity for at least some aspects of the work.40 It requires investing in champions who are developing such approaches, involving different approaches when awarding research grants,41 and giving credence to such efforts and their practitioners within the clinical community. In the end, particularly in the diffusion of such practices, it involves fiscal and regulatory incentives that

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07 APPENDIX E support them, moving toward broader rather than narrower definitions of what constitutes child health services.42 ENDNOTES 1 Halfon, N., and M. Hochstein. 2002. Life course health development: An integrated framework for developing health, policy, and research. Milbank Quarterly 80(3):433- 479. Forrest, C., and A. Riley. 2004. Childhood origins of adult health: A basis for life- course health policy. Health Affairs 23(5):155-164. 2 Family income and socioeconomic status also has strong correlations with a broad variety of child outcomes and with race and ethnicity. See Haveman, R., and B. Wolfe. 1994. Succeeding generations: On the effects of inestments in children. New York: Russell Sage Foundation. There likely is no single etiology to explain all disparities, and there are substantial variations in different child outcomes by different races and ethnicities, independent from income and socioeconomic status, that also need to be addressed. 3 This refers to toxic elements in a broad sense, including environmental exposure to toxic elements (lead paint, chemicals, poor air quality, etc.), exposure to unsafe situations (violence and crime, poor housing, etc.), and presence of a socially toxic environment (social disorganization, absence of positive peer and adult activities, etc.). Garbarino, J. 1995. Raising children in a socially toxic enironment. San Francisco, CA: Jossey-Bass. 4 In dominant culture, this positive identity often is based on a realistic belief that op- portunity exists through personal achievement. The disconnect that minorities may face between that dominant culture belief and their own opportunity (because of institutional racism and/or cultural clashes in undergirding values and expectations) can be cause for alienation, anger, and anomie, all to the detriment of health and healthy development. 5 Views in other parts of the world tend to be more holistic and ecological, particularly within developing countries. The World Health Organization places a very pronounced role on community building as a tool for improving health. The United States itself has a very individualistic political culture, with strong underlying assumptions regarding both personal responsibility and availability of opportunity that tend to view adult outcomes as the result of adult decisions and not external factors. This has led to both health and social interventions and policies that focus upon individual change as opposed to com- munity condition change. 6 The term child health practitioners refers to pediatricians, family practitioners, and pe- diatric nurse practitioners who provide primary care for children. 7 Schor, E. 2007. The future pediatrician: Promoting children’s health and development. Journal of Pediatrics Nov:S11-S16. 8 This paper will largely use the term ulnerable neighborhoods to describe those places where challenges to successfully raising children are greatest. These neighborhoods also have been referred to as “distressed,” “disinvested,” “poor, tough,” or “poor, immigrant, and minority” neighborhoods in the field. This paper also will use the term children of color to refer to all children who are not identified as white, non-Hispanic, although His- panic is considered in the census as a descriptor of origin or ethnicity and not race—and many Hispanics select their race as “white.” 9 Horowitz, C., and E. Lawlor. 2007. Community approaches to addressing health dispari- ties. Paper for the Institute of Medicine’s Roundtable on Racial and Ethnic Health Dis- parities. See also Best, A., D. Stokols, L. Green, S. Leischow, B. Holmes, and K. Buchholz. 2003. An integrative framework for community partnering to translate theory into effec- tive health promotion strategy. American Journal of Health Promotion 18(2):168-176.

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08 FOCUSING ON CHILDREN’S HEALTH 10 Although entry into early prenatal care is substantially lower in pregnancies among Hispanic women, both low birth weight rates and infant mortality rates are also lower, compared even with pregnancies among white, non-Hispanic women. These data are even more pronounced when controlled for income. A landmark meta-analysis of more than 10,000 international research studies on effective practices in childbirth concluded that “social, psychological, and fiscal supports” were more important to healthy birth outcomes for women without specific medical complications than were clinical visits during pregnancy (and that doulas and nurse midwives produced better birth outcomes than obstetricians for these pregnancies, because they spent more time and provided more social support). Enkin, M., J. Keirse, and I. Chalmers. 1989. A guide to effectie care in pregnancy and childbirth. Oxford, UK: Oxford University Press. While pregnancy is not necessarily regarded as a medical condition requiring clinical care within Hispanic communities, it is more likely to be treated as a joyous event that involves intensifica- tion of attention and support for the woman experiencing pregnancy, such as social and psychological (and to some extent financial) supports. Research also suggests that these more positive birth outcomes among Hispanic women are generally for first-generation immigrants and may not extend to second- and third-generation women whose families and support systems have been acculturated to other practices and roles regarding preg- nancy and work. 11 Orzechowski, S., and P. Sepielli. 2003. Net worth and asset ownership of households: 1998 and 2000. Current Population Reports. Washington, DC: U.S. Census. Pp. 70-88. 12 Brooks-Gunn, J., G. Duncan, and L. Aber (eds). 1997. Neighborhood poerty: Volume I. New York: Russell Sage Foundation. Xue, Y., T. Leventhal, J. Brooks-Gunn, and F. Earls. 2005. Neighborhood residence and mental health problems of 5- to 11-year-olds. Archies of General Psychiatry 62(5):554-563. 13 Bruner, C., M. Wright, and S. Tirmizi. (2007). Village building and school readiness: Closing opportunity gaps in a dierse society. Des Moines, IA: State Early Childhood Policy Technical Assistance Network. Pp. 5-14. 14 Geomapping of vital records statistics and birth outcomes is increasingly common and shows the spatial concentration of infant mortality, low birth weight, and entry into prenatal care. Elevated blood lead levels also have been geomapped and have extremely high correlations to low-income housing areas of pre-1950s housing. Childhood obe- sity has even been linked to neighborhoods with high poverty concentrations, lack of access to grocery stores, and absence of safe recreational spaces. The Annie E. Casey Foundation’s Making Connections Initiative, working in 10 inner-city neighborhoods across the country, has conducted extensive surveys of residents asking selected ques- tions regarding child health, one of which is identical to the questions from the national health survey regarding childhood asthma. In all Making Connections surveys analyzed (for Denver, Des Moines, Indianapolis, and Oakland), parent-reported asthma prevalence rates among young children were double those of the state as a whole. Bruner, C., and S. Tirmizi. 2007. Making connections wae II surey and key findings on children healthy and prepared for success in school. Des Moines, IA: Child and Family Policy Center. 15 Bruner, C., and S. Tirmizi. 2007. Making connections wae II surey and key findings on children healthy and prepared for success in school. Des Moines, IA: Child and Family Policy Center. 16 National Scientific Council on the Developing Child. 2005. Excessie stress disrupts the architecture of the deeloping brain. Cambridge, MA: Center on the Developing Child at Harvard University.

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09 APPENDIX E 17 The Aspen Institute has been a leader in promoting a “theory of change” approach to evaluating comprehensive, community-building initiatives and has produced three use- ful volumes on this subject. See Weiss, C. 1995. Nothing as practical as good theory: Exploring theory-based evaluation for comprehensive community initiatives. In New approaches to ealuating community initiaties: Concepts, methods, and contexts, edited by J. Connell, A. Kubisch, L. Schorr, and C. Weiss. New York: Aspen Institute. 18 Genetic factors and individual constitution also contribute to children’s health and healthy development but also represent givens, generally not subject to change except through one of the other items on the list. 19 See endnotes 30–33. 20 One such suggested breakdown of the relative contribution to health is constitution (10%), medical care (20%), environmental conditions (20%), and personal factors (50%). 21 Currie, J. 2005. Health disparities and gaps in school readiness. Future of Children 15:1. 22 Hagan, J., J. Shaw, and P. Duncan. 2007. Bright futures: Guidelines for health superi- sion of infants, children, and adolescents. Elk Grove Village, IL: American Academy of Pediatrics. 23 Answering these questions requires evaluation methodologies that are both rigorous and appropriate. A promising framework for evaluating comprehensive, systems change initiatives that takes into account their complexity and need for multiple evaluation meth- odologies while involving rigor in seeking to attribute causality is found in Coffman, J. 2007. A framework for ealuating systems initiaties. www.buildinitiative.org (accessed June 9, 2009). 24 For a particularly poignant example, see Fadiman, A. (1997). The spirit catches you and you fall down: A Hmong child, her American doctors, and the collision of two cultures. New York: Farrar, Straus, and Giroux. 25 Discussing the underlying effects of racism on child health and healthy development is well beyond the scope of this paper, but the topic deserves a similar provocative discus- sion as that applied to achievement disparities in education set out in Perry, T. 2003. Up from the parched earth: Toward a theory of African American achievement. In Young, gifted, and black: Promoting high achieement among African-American students, ed- ited by T. Perry, C. Steele, and A. Hilliard, III. Boston, MA: Beacon Press. Pp. 1-108. There also is some research that stress produced by contact with discrimination has adverse impacts upon healthy births. Collins, J., R. David, A. Handler, S. Wall, and S. Andres. 2004. Very low birth weight in African American infants: The role of maternal exposure to interpersonal racial discrimination. American Journal of Public Health 94(12):2132-2138. 26 Lemann, N. 1994. The myth of community development. New York Times Sunday Magazine. January 9, Section 6, 27. 27 Jarrett, R. (1999). Successful parenting in high-risk neighborhoods. The Future of Chil- dren 9(2):45-50. 28 Bruner, C. 2006. Social service systems reform and poor neighborhoods: What we know and what we need to find out. In Community change: Theories, practice, and eidence, edited by K. Fulbright-Anderson, and P. Auspos. New York: Aspen Institute Roundtable on Community Change. 29 Bruner, C. 2006. Village building and school readiness. In Community change: Theories, practice, and eidence, edited by K. Fulbright-Anderson, and P. Auspos. New York: Aspen Institute Roundtable on Community Change. Pp. 5-14.

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0 FOCUSING ON CHILDREN’S HEALTH 30 Putnam, R. 1993. The prosperous community: Social capital and public life. The Ameri- can Prospect 4 (March 21): 35-42. Putnam, R. 1993. Making democracy work: Ciic traditions in modern Italy. Princeton, NJ: Princeton University Press. 31 Bernard, B. 1991. Fostering resiliency in kids: Protective factors in the family, school, and community. Portland, OR: Far West Laboratories. Henderson, N. B. Benard, and N. Sharp-Light, eds. 1999. Resiliency in action: Practical ideas for oercoming risks and building strengths in youth, families, and communities. San Diego, CA: Resiliency in Action Press. 32 Catalano, R., and D. Hawkins. 1996. The social development model: A theory of anti- social behavior. In Delinquency and crime: Current theories, edited by J. Hawkins. New York: Cambridge University Press. 33 Benson, P. 2000. All kids are our kids: What communities must do to raise caring and responsible children and adolescents. San Francisco, CA: Jossey-Bass. 34 Guyer, B., S. Ma, H. Grason, K. Frick, A. Perry, and J. McIntosh. (2007). Inestments to promote children’s health: A systematic literature reiew and economic analysis of inter- entions in the preschool period. Washington, DC: Partnership for America’s Economic Success. Bruner, C. 2001. A stitch in time. Washington, DC: Finance Project. 35 The widely cited research on the importance of investing in preschool because of its return on investment is based upon such multiple gains that cover far more than educational impacts. In fact, the educational gains alone would not warrant such investments—it is the social gains (reduced criminal activity, adolescent parenting, etc.) that produce the high rates of return on such investments. See Bruner, C. 2006. Many happy returns. Des Moines, IA: State Early Childhood Policy Technical Assistance Network. 36 These are only two of many possible programs, selected for illustrative purposes. The American Academy of Pediatric’s CATCH program has been working since 1989 to promote better linkages between practice and the community. See http://www.jhsph. edu/wchpc/projects/catch.html. 37 Dworkin, P. and J. Bogin, eds. 2006. Help me grow roundtable: Promoting develop- ment through child health services. Journal of Deelopmental and Behaioral Pediatrics 27:1S. 38 Hughes, M., M. Damboise. 2007. Help me grow: 2007 annual ealuation report. Hart- ford, CT: Center for Social Research, University of Hartford for the Children’s Trust Fund. 39 This is one of five plausible “theories of change” for addressing the needs of children in poor neighborhoods presented more fully in Bruner, C. 2006. Social service systems reform and poor neighborhoods: What we know and what we need to find out. In Com- munity change: Theories, practice, and eidence, edited by K. Fulbright-Anderson, and P. Auspos. New York: Aspen Institute Roundtable on Community Change. 40 Coffman, J. 2007. A framework for ealuating systems initiaties. Build Initiative. Partici- patory or empowerment evaluation also has a role in this work, but only if it ultimately also meets some test of attributing causality. This includes the ability for disproof, includ - ing disproof of the role of participant-led change as sufficient or necessary for improving healthy child development outcomes. 41 Polansky, N. 1995 (unpublished). Historical perspectie in ealuatie research. Polanski relates the story of Fritz Redl, an imaginative and innovative researcher on developing treatments for disturbed youth. Previously funded by the National Institute of Health, he sought to apply for additional funding, but “came up against a newly erected wall. The applicant was now asked not only whom he wanted to treat, but precisely what the treatment would be, and by what design it would be evaluated so that one could tell whether it differed for those not so treated. … [Redl needed] funding for a free-wheel- ing project in which he would try to find ways of approaching heretofore unreachable

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 APPENDIX E children. But, the grantors—who knew little about the substance of this work but found great security in the irrefutable logic of design—wanted him to state in advance what he would learn. Asked Redl, ‘If I already know how to treat these kids, why would I be asking for support in order to find out?’” Redl’s logic (similar to Einstein’s statement, “If we knew what we were doing, it wouldn’t be research”) points to the need for multiple approaches to learning and evaluation. In some instances, and as Polanski points out in the case of Redl’s work, it may also be that “the patient is his own control.” 42 There is an adage, “If you don’t pay for it, it won’t get done.” This involves funding streams and reimbursement systems within clinical practice that cover the time and re- sources needed to provide for effective referrals to and collaborations with community service providers. Currently, at the federal level the Center for Medicare and Medicaid Services (CMS) is seeking to restrict the use of targeted case management under Medic- aid, which has been used for precisely the purposes of linking children with medical and transmedical services to improve their health discussed in this report. Care coordina- tion and targeted case management are essential for helping children and their families develop bridges between clinical services and other supports necessary for their healthy development and need to be part of a financing system. As another simple illustration, the Reach Out and Read program has demonstrated a positive effect upon early literacy and is a low-cost intervention that pediatricians generally value. If the purchase of Reach Out and Read books was a reimbursable item under Medicaid and private health insur- ance coverage, it is likely that Reach Out and Read would become a part of routine practice much more quickly than where book purchasing must rely upon grants or other contributions.

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