By Charles Bruner, Kay Johnson, Maxine Hayes, David Willis, Paul Dworkin, and Wendy Ellis
The interrelated triple crises driven by COVID-19, racial injustice, and the economic downturn have disrupted virtually all aspects of life for children and families – with profound impact on children’s overall health and development. COVID-19 has challenged the nation’s child health care system to provide primary, preventive, and promotive care in a time of social separation and a time when the number of uninsured children is rising. These crises have focused attention on structural racism that drives the disparities, inequities, and unequal treatment experienced by children and families of color.
The disruptions in the health care system place child health care at a crossroads. Current conditions have underscored the critical role primary care providers must play in assuring the health and well-being of children and families, particularly in times of stress and crisis. COVID-19 has accelerated the use of telemedicine and other virtual services, which in turn revealed gaps in access due to the digital divide that exists among communities of color, the poor, and rural populations.
It also has exposed limitations in current child health practice in responding to both bio-medical and social determinants of health. It has called the question on the imperative to address structural racism and bias to eliminate health disparities and ensure equity.
Child health care will not, cannot go back to what existed before COVID-19. The challenge and opportunity are to build back better, smarter, and fairer – in ways that directly confront and address issues of racism, privilege, and social disadvantage.
Calls for child health care transformation began well before the COVID-19 pandemic. Children are not “little adults,” and their needs from the health care system differ from those of adults. Children, however, have not been cost drivers in health care, and health care transformation has long prioritized cost containment and therefore focused on adults with chronic or high cost health conditions.
The child health care system needs transformation focused on advancing preventive and proactive care to promote lifelong health. Child health care transformation requires emphasis on responding to the strengths and well-being of parents, as well as children, and on the social determinants of health. Society has the moral obligation to ensure the health and optimal development of all children, including concerted efforts to ensure equity.
Over the past five years, the Robert Wood Johnson Foundation has funded a Health Equity and Young Children Initiative and an Integrated Care for Kids InCK Marks project to support leaders in defining and advancing child health care transformation. These two projects have identified exemplary practices, synthesized research in the field, and created a network of organizations and leaders working toward that transformation.
These projects found a strong foundation in the field for transformation. The definitions of child health, the principles for a medical home, and the Bright Futures guidelines for well-child care – all developed or endorsed by the American Academy of Pediatrics – emphasize the need for child health to respond holistically and relationally in the context of the child’s family and community. Child health leaders have added an imperative for equity and racial justice.
Transformation will require authentic engagement and partnering with the children, youth, and families served. It also will require intentional and proactive strategies designed to reduce the health effects of structural, institutional, and personal, racism, including racial, linguistic, and cultural respect and responsiveness.
InCK Marks has drawn from research and best practices within the field of child health care to focus on what transformation will require in terms of practice, metrics, financing, and culture.
With respect to practice, a growing and fulsome array of both evidenced-based programs and exemplary practices demonstrates substantial positive impacts on children’s health and development.
The design for high performing medical homes for young children in Medicaid calls for:
- Improvements in primary care and well-child visits to respond better to social determinants, build on family strengths, and support and engage parents;
- Enhanced care coordination to ensure authentic engagement and two-generation support and access to and use of community resources to meet child and family needs; and
- Integration within or linkages to other health, developmental, and family support services that advance health and development.
Within the well child visit, greater alignment with Bright Futures guidelines is needed, particularly in terms of promotion and screening for general development, social-emotional development, and social determinants of health. Enhanced relational care coordination that truly partners with families in advancing children’s health and development must be incorporated as an integral part of a medical home team.
Pediatric primary care providers can integrate models such as DULCE, HealthySteps, and Reach Out and Read that focus on supporting foundational parent-child relationships, as well as links to evidence-based models in the community such as home visiting and early childhood mental health services. Child health leaders need to be connected with other early childhood services and systems (e.g., through models like Help Me Grow), as well as support safe, healthy, and fair communities. Transformation will equally require creating culturally safe medical homes that respectfully engage and respond to families.
InCK Marks has identified practitioner champions and innovators across the country who are leading the way. These advanced practices have incorporated the more holistic approaches described above and also have stepped up to begin to confront racism and its impacts upon health. During recent months, they have responded to the COVID-19 crisis and disruption as an opportunity for more improvements, such as expanded telehealth, providing more relational care coordination and support, and further integrating with community-based services and organizations.
Many are recognizing and responding to the need to adopt approaches that are anti-racist, mitigate poverty, and engage families in authentic and meaningful ways. In terms of the diffusion of innovation paradigm, InCK Marks has discovered innovators and early adopters who are showing the way forward and attest to the value of doing so. There is growing consensus and willingness in the child health field and its respected leadership to change, if financing is adequate to support high performing medical homes and transformed practice.
With respect to finance, InCK Marks has participated with other leaders in health financing to develop a consensus statement on the need for changes in Medicaid financing to support transformation and realize the potential of Medicaid’s Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) child health benefit.
One key point of consensus is that adopting value-based payment approaches requires reimbursing services with higher value at rates that reflect their value (as opposed to the emphasis on cost-containment in most value-based payment systems for adults). Paying more for high performing medical homes for young children in Medicaid is an example of the opportunity to use value-based payments in child health.
With respect to metrics and measurement, transformation is needed at the clinical practice and at the population levels. Within practice, population risk management, promotion efforts, and surveillance and screening for children’s social development and social determinants of health require greater attention. Today, only about half of young children even receive standard developmental screening. Screening and responses related to social determinants of health are critical to building back better, smarter, and fairer.
At a population level, this means partnering with public health, home visiting, and early childhood system builders in identifying neighborhoods and communities for increased investment. It means disaggregating data to ensure that disparities and inequities are brought to attention and addressed. There are emerging tools and knowledge in all these areas to advance measurement and its use for continuous improvement.
With respect to culture, attention to racism, historical policies that drive racial inequity, unequal treatment, inequities in access, and bias in providing services is crucial. Child health practitioners must adopt a strength-based approach and go beyond screening for Adverse Childhood Experiences (ACEs) to screening for Positive Childhood Experiences (PCEs) and focus on social and relational as well as medical complexity.
Practitioners must understand the “pair of ACEs” that includes systemic root causes of racism and inequity. Public policies implemented over the past 400 years, designed with either the explicit intent of racial oppression or willfully ignorant of disparate impacts, have produced profound disparities in opportunity and outcome by race – including health status.
Current structural, institutional, and personal racism perpetuate and often exacerbate disparities. Racism causes harm to all through threats to safety and economic opportunity and through stress and blocked aspirations and opportunity. The health system cannot correct or rectify all such inequities on its own, but it can and should be part of much larger public and private actions to do so.
This means the child health care system must recognize the impacts of racism and inequity on the children and families it serves. Transformation that engages and partners with families within the communities they live requires attention to and a priority on countering the impacts of racism. As part of child health transformation, practices must engage families as partners, continuously work to be more culturally and linguistically competent and responsive, and themselves become more diverse. Intentional efforts to reduce bias are critical.
Partnering includes listening to families, lifting up and responding to family concerns, and adopting new ways to counter institutional and structural racism, including those that currently create barriers between the practice and the community. This may involve difficult conversations about racism, privilege, and bias, but leaders in child health transformation find that doing so contributes to more effective practice.
We know enough to act. Science points to the value of fostering optimal health and development for children, with benefits across the lifespan. Research shows what works in transforming from standard practice to more holistic, two-generational, and relational approaches. Measures of child well-being show the imperative for closing disparities by race, language, and culture and countering the profound harm caused by racism. While the complexity of the child health care system and magnitude of the change from current practice can seem overwhelming, there is expertise in the field, as represented in the InCK Marks’ national resource network, to do so in practice, metrics, financing, and culture.
The challenge and opportunity for our national going forward is to give top priority – in policy and public investments – to child well-being through child health care transformation, adequate funding for a public health infrastructure to promote community well-being, and economic supports for families to provide safe and stable environments for our children.
If the United States is to continue its leadership in the world, it must have policies and investments that help families raise the next generation to be healthier, better educated, and better able to work in a more diverse world than ever before. Child health care transformation has a fundamental role in creating that future and ensuring equity and the well-being of our next generation.
The Integrated Care for Kids-InCK Marks Initiative is funded by the Robert Wood Johnson Foundation to help leaders – practitioner champions, administrators, policy research and advocacy organizations and experts, and policy makers at the state community, and federal levels – advance child health care transformation. InCK Marks is guided by a National Advisory Team and draws upon and promotes the work of a national resource network of over 35 national organizations at the cutting edge in advancing child health transformation. InCK Marks produces reports synthesizing the state-of-the-field in health care transformation at the practice, finance, metrics, and culture levels and conducts webinars and other forums to share its own and the work of network members. Charles Bruner serves as the National Resource Network manager and grant administrator. The National Advisory Team which produced this report are: Kay Johnson, chair; Maxine Hayes, co-chair; Kamala Allen, Mayra Alvarez, Melissa Bailey, Scott Berns, Christina Bethell, Elisabeth Burak, Paul Dworkin, Beth Dworetzky, Wendy Ellis, Jeff Hild, Shadi Houshyar, Nora Wells, and David Willis. InCK Marks publications, webinar recordings and slides, and other materials are available on its website: www.inckmarks.org.
[Editor’s Note: The Center for Children and Families is a member of the InCK Marks National Resource network and CCF Senior Fellow Elisabeth Wright Burak serves on its National Advisory Team.]