Health equity is a key pillar in supporting a future in which CYSHCN enjoy a full life and thrive, as envisioned by experts and community partners who gathered in 2019 and 2020 to develop the Blueprint for Change: Guiding Principles for a System of Services for Children and Youth With Special Health Care Needs and Their Families. However, a variety of contextual factors impact health outcomes across the life course and intergenerationally and must be addressed to achieve this goal. For example, poverty and discrimination, including by some health care professionals and systems, are important, modifiable root causes of poor health outcomes. There are numerous barriers to achieving health equity, including political will, lack of resources, insufficient training, and limited cross-sector collaborations. Political, cultural, societal, and environmental interventions are necessary to eliminate health disparities and achieve health equity. The entities that serve CYSHCN should be equitably designed and implemented to improve health outcomes and address health disparities. Many entities that serve CYSHCN are taking positive steps through workforce development, policy changes, community engagement, and other means. The purpose of this article is to frame health equity for CYSHCN, detail their health disparities, review barriers to health equity, provide examples of strategies to advance health equity for them, and describe a path toward the future in which all CYSHCN have a fair and just opportunity to be as healthy as possible.
All children and youth with special health care needs (CYSHCN), as currently identified, have chronic health conditions. Health, in this context, should be understood not as the absence of disease, but rather the extent to which children are “able or enabled to (1) develop and realize their potential; (2) satisfy their needs; and (3) develop the capacities that allow them to interact successfully with their biological, physical, and social environments.”1 Numerous contextual factors unrelated to a child’s biology and personal choices impact the “extent to which children are able or enabled” to be as healthy as possible. Contextual factors that differentially and negatively impact certain groups of children, such as those living in poverty or members of oppressed or minoritized (Table 1) racial groups, are the sources of health disparities.2–4 These contextual factors are often referred to as social determinants of health: the conditions in which children are born into, live, learn, play and grow up.5 Whether they be cultural, political, environmental or interpersonal, contextual factors influence health across the life course and generations.5 Children of various backgrounds, including those with intersectional identities, are subject to health disparities through the mechanisms of poverty and discrimination—such as, but not limited to, racism, classism, and ableism in all forms from personally-mediated (differential beliefs and actions) to structural discrimination —and their downstream consequences. These consequences include limited access to quality education, stable housing, nutrient-rich balanced diets, safe neighborhoods, and health care.6–11 Eliminating the factors that inhibit children from thriving and from having a fair and just opportunity to be as healthy as possible is necessary for achieving health equity for CYSHCN.12,13
Data
Data from the 2016 through 2019 years of the National Survey of Children’s Health (NSCH), funded and directed by the Health Resources and Services Administration's (HRSA) Maternal and Child Health Bureau (MCHB), identify the magnitude of differences in the prevalence and impact of special health care needs among children based on the contextual factors in which they live (see Ghandour et al14 for methodologic details; see Fig 1A for the prevalence of SHCN). Overall, 19.4% of non-CYSHCN in the United States live in poverty, whereas 23.8% of CYSHCN do. Additionally, CYSHCN are overrepresented in poorer and more rural states, such as Mississippi, Louisiana, Kentucky, and West Virginia.14 Data from the NSCH demonstrate that minoritized race, poverty, and special health care needs often track together; for example, 43.4% of Black CYSHCN live in poverty compared with 33.6% of Black non-CYSHCN and only 10.9% of White non-CYSHCN.
Similarly, disability, ie, activity limitations caused by chronic conditions, is more common among children living in poverty and those of minoritized race.15 Our analysis demonstrates that the presence of disability (meeting the CSHCN Screener functional limitation criterion)16 is associated with poverty-driven and minoritized differences among CYSHCN (Fig 1B). There is an inverse stepwise relationship between household income, such that 31.3% of CYSHCN living in poverty have disabilities compared with 20.8% of those living above 400% of the federal poverty level (FPL). Whereas 22.9% of White CYSCHN have disabilities, 30.9% of Hispanic CYSHCN do. As demonstrated by other studies, CYSHCN with disabilities and complex health care needs, minoritized CYSHCN, and those living in or near poverty more commonly have unmet needs and limited access to a pediatric medical home and a well-functioning system of care (a MCHB national outcome measure focused on multiple aspects of health care delivery).17–23 These inequities are long-standing.24–27 As shown in Fig 1C, receipt of care in a well-functioning system differs by race and family income, such that White non-Hispanic children and children in more financially resourced families more commonly report such receipt. Similarly, Fig 1D demonstrates that fewer CYSHCN with disabilities reported receipt of care in a well-functioning system compared to CYSHCN generally and that the same patterns of inequities exist—ie, White non-Hispanic children and children in more financially resourced families more commonly report receiving care in a well-functioning system.
Unequal treatment and discrimination in the systems that serve CYSHCN are not always easily recognized but are a part of the lived experience of many of them and their families as described by author D.H. who offers the first narrative in Table 2 to demonstrate permissive racism, ie, the continued tolerance for racism as a part of life experienced by her family. Ableist thinking among health care professionals, that disability is an indicator of inferiority and must be fixed, is also common and serves as a barrier to health equity, as described by author D.C. in the second narrative in Table 2.28,29 Ableism is also evident when the only framing of disability is as a tragic loss, as described by author D.H. in the third narrative in Table 2.
Vision for the Future
The MCHB gathered experts and stakeholders from across the country to inform the Blueprint for Change: Guiding Principles for a System of Services for CYSHCN and their Families (hereafter referred to as Blueprint for Change). The Blueprint for Change envisions a future in which CYSHCN “enjoy a full life from childhood through adulthood and thrive in a system that supports their families and social, health, and emotional needs, ensuring their dignity, autonomy, independence, and active participation in their communities.”
As described in the Blueprint for Change and consistent with Healthy People 2030, a key pillar of the future envisioned is that “all CYSHCN have a fair and just opportunity to be as healthy as possible and thrive throughout their lives (eg, from school to the workforce), without discrimination, and regardless of the circumstances in which they were born or live” (Table 3).29,30 Underlying values that guide this work include the following: all children should be equally valued; resources to promote health should be distributed fairly; commitment to health equity represents justice in health; and progress is measured by a reduction in health disparities.31 Achieving this future requires that disparities are addressed at their root causes (Health Equity Principle 1, Table 3).29 Until disparities are eliminated at their root causes, the sectors, systems, and programs that fund, oversee, and/or deliver services and supports for CYSHCN must address the consequences of disparities to improve health outcomes equitably for CYSHCN (Health Equity Principle 2, Table 3).29
The Blueprint for Change has elevated health equity as a goal that permeates all aspects of programs and policies at the community, state, and national levels that affect CYSHCN and their families. The Blueprint acknowledges that the process to achieve health equity requires removing all obstacles and barriers to health, which includes transforming the structures, policies, and beliefs that systematically benefit certain groups of people over others.29 This approach means not only measuring the actions of all community, state, and federal programs for adherence to health equity principles, but also raising the expectation that all programs serving CYSHCN will actively collaborate, promote, and engage in system redesign. All programs also must work toward eliminating the policies and systems that propagate the entrenched systematic oppression of certain groups of children based on ability, race, indigenous status, class, gender identity, sexual orientation, nativity, religion, or other group designation.
In this special issue of Pediatrics, 3 other critical areas (pillars) are presented as part of the Blueprint for Change29 : quality of life and well-being, access to services, and financing for services. Health equity is thematically incorporated throughout all 3. (1) Quality of life and well-being: considerations of how to advance the well-being and quality of life for children and families, as described by Coleman et al, emphasize ensuring equitable advancement such that all children, regardless of their social, economic, environmental, and health circumstances, have the opportunity to achieve the best quality of life possible.32 (2) Access: as detailed by Kuo et al, certain children experience systematic access barriers to services and supports that require an equity-based access strategy.33 (3) Financing: there are a multitude of reasons why CYSHCN and their families experience inequitable access, 1of which is how services are financed, as described by Schiff et al.34 To be equitable, CYSHCN and their families must be able to get all needed services and supports, regardless of their financial resources, social position, or type of coverage.35
Challenges to Achieving the Envisioned Future
There are myriad complex challenges to achieving health equity for CYSHCN. For example, key stakeholders need to be willing to dismantle federal, state, and local policies and laws that codify unequal treatment and replace them with equitable policies and laws,29 specifically those focused on health care, education, housing, public safety, criminal justice, employment, foster care, welfare, and other sectors affecting health.36,37 Although there have been political and legal advances regarding the civil rights of minoritized groups (eg, the Americans with Disabilities Act, the Rehabilitation Act of 1973, the Civil Rights Act of 1964), policies and laws that perpetuate unequal treatment are difficult to change, and existing rights are not always enforced.38 Notably, the United States has opted not to ratify the United Nations Convention on the Rights of People with Disabilities or the United Nations Convention on the Rights of the Child,39 and Congressional ratification is unlikely.40 In addition, the United States is the only wealthy nation that does not view health care as a human right.39 Although some prominent individuals and groups have called for universal health care coverage for children, they have yet to gain substantial political traction in nonprogressive circles.41,42 Civil rights in other arenas have been enacted legislatively but lag in implementation. For example, free appropriate public education in the least restrictive environment for children and youth with disabilities, provided under the Individuals with Disabilities Education Act Part B, has been implemented in only 21 states and the Republic of the Marshall Islands.43 Societal norms, such as the entrenched racism and ableism described in the narratives above, also are substantial obstacles to health equity for CYSHCN.
In addition to these societal barriers, numerous operational barriers exist in achieving a future in which all CYSHCN thrive. Despite their connected purposes, the various agencies and service sectors that constitute systems of services for CYSHCN do not yet actively work together to coordinate activities for advancing health for CYSHCN.44 These obstacles compound existing barriers related to availability and access of services based on geography, transportation, tribal designation, cultural safety, and other issues,45,46 and present a clear barrier to addressing health equity.47 Author D.H. describes the challenges her family faces with home care providers who are not culturally respectful, but who they must tolerate to receive services in the final narrative in Table 2.
Further, the systems that serve CYSHCN are not designed to address health equity and can exacerbate disparities in both the short and long term. Take, for example, the circumstances of providing primary pediatric care in the United States. Although comprehensive, coordinated care in a medical home is the standard of care, disparities exist in medical home access for CYSHCN of color. For example, 24.2% of Native Hawaiian or Other Pacific Islander CYSHCN, 33.7% of Hispanic CYSHCN, 37.1% of American Indian or Alaska Native CYSHCN, and 39.6% of Black CYSHCN receive care in a medical home, compared with 47.6% of White CYSHCN.14 Further, care coordination is not adequately or equitably delivered or paid for.35,48,49 One result is that when some payors reimburse more money for services rendered (as is the case with most private payors compared with Medicaid)35 or do not pay for care coordination, practices can be incentivized to structure their clinic schedules and clinical activities to see more patients with private insurance and children without chronic conditions.50 In other words, these practices might choose to care for children who tend to be more economically advantaged, White non-Hispanic (because they are less likely to be poor), and without disabilities. Poor children, minoritized children, and CYSHCN are more commonly covered by Medicaid51,52 and therefore, can be crowded out from getting appointments to see their pediatricians. Also, they are less likely to get the medical home services they need to manage their health.18–20,53 Thus, the current payment structure disincentivizes health equity and promotes systemic ableism, classism, and racism in health care delivery.54 These problems are compounded when implicit or explicit biases hinder the delivery of culturally responsive, family-centered care—the hallmarks of the medical home.19,27
Toward the Envisioned Future
The work to achieve the envisioned future is both internal to the entities that serve CYSHCN and collaborative between them and the people they serve; requiring organizational reflection and engagement to change operations and to develop collaborative capacity to hone the skills of doing this work together.55 Most changes will occur incrementally because changing systems entails identifying which structures and processes perpetuate health disparities and then altering the power structures, policies, relationships, resources, routines, and values operating within a system to dismantle oppression and promote health equity.56
Policy
Policy change that seeks to eliminate the root causes of health disparities as opposed to addressing the disparate outcomes after the fact would be the mechanism most likely to achieve health equity for CYSHCN, as described in Health Equity Principle 1 (Table 3).29,41 Conceptually, this is “an ounce of prevention is worth a pound of cure.” For example, substantially reducing child poverty is both achievable and of long-term financial benefit.57 Some of the actions that the American Rescue Plan Act outlines can reduce child poverty, support community health initiatives, enhance the Affordable Care Act, increase incentives to states to expand their Medicaid programs, and address social contributors to health.58,59 Also, the enactment of nondiscrimination laws and policies, coupled with enforcement of existing nondiscrimination laws and policies (eg, the Americans with Disabilities Act; Individuals with Disabilities Education Act; and the treatment provisions of the Medicaid Early Periodic Screening, Diagnostic, and Treatment benefit), would help dismantle structural barriers to opportunities, as described in Health Equity Principle 1a (Table 3).
New state laws or changes also provides opportunity to alter agency structures and processes to fund, develop, and deliver services that reduce health disparities, as described in Principle 2. For example, Colorado enacted legislation making state grants more accessible to community organizations that represent minoritized communities (Table 4). These organizations are better positioned to address health disparities within their communities because of their connections to the community and their members’ lived experience with the issues
Research
Advancing health equity requires the knowledge that disparities persist. As described in Health Equity Principle 1c, surveillance systems are needed to track contextual risk factors impacting health outcomes and their consequences. Title V Maternal and Child Health Block Grant-receiving (Title V) agencies, health care systems, and other systems-of-care actors rely on NSCH data to describe their CYSHCN population; however, many jurisdictions lack sufficient data to describe them, let alone minoritized populations within the broader CYSHCN population. Some Title V CYSHCN agencies collaborate with minoritized communities to obtain data that describe minoritized community needs. For example, through a request for proposal process, Oregon’s Title V CYSHCN agency contracted with culturally specific service organizations to conduct participatory needs assessment studies (Table 4). In addition to investing financial resources into and developing relationships with these communities, these organizations also co-own and co-disseminate the results with the Title V agency. Further, state-level policy, such as previously described in Colorado, facilitates such collaborations.
Research should be conducted that recognizes and reports discrimination as a cause of poor health across the life course and suggests strategies to both identify and intervene for children at risk for special health care needs and poor health.10,60 Research and rigorous program evaluation are required to assess how innovative strategies work for individual children and communities, including the development of measures for equity. It is insufficient to solely report on disparities; evidence-driven solutions to reduce disparities are required. As described in Health Equity Principle 2c, using performance and outcome measures will help hold to account those entities serving CYSHCN and ensure adherence to nondiscriminatory equitable service delivery.29 Additionally, implementation science strategies should be employed to ensure equitable dissemination of what methods work and how to scale them.61 Evaluations for programs and services should include how well they address health equity, as well as the presence of minoritized communities at the table to guide evaluative processes from needs assessments to programmatic evaluations.29
Practice
Achieving health equity for CYSHCN requires that the entities funding, delivering, and/or monitoring services and supports are designed to be equitable without mechanisms that invertedly or purposefully unfairly advantage 1 group of children over another for said services and supports, as described in Health Equity Principle 2.29 Collaboration across sectors that serve CYSHCN is needed, as noted in Health Equity Principle 2a.29 These sectors include but are not limited to education, child welfare, vocational training, habilitation and rehabilitation, housing and community development, law enforcement and the criminal justice system, health care, nonprofits, transportation, and tribal and other governmental agencies. Not only do the sectors need to collaborate in new ways to become a system of services organized and coordinated to meet the multiple and changing needs of CYSHCN and their families, but they also must collaborate with equity and justice at the center of their work and make the business case for equity.34,36,54,62 Such collaboration requires educating the existing workforce to recognize manifestations of oppression in day-to-day work practice, as described in Health Equity Principle 2b.
As eloquently shown in the narratives in Table 2, much work needs to be done to mitigate personally-mediated discrimination and implicit bias in health care and the public health sector to provide culturally responsive care.63 Several strategies are being used in these settings across the country. For example, the Massachusetts Department of Public Health’s Racial Equity Initiative employs multiple strategies to build such capacity in its workforce, including using affinity groups for White employees and those of color (Table 4). The groups hold White staff accountable for pursuing their learning about oppression without placing educational burden on or risking retraumatization of staff of color.64 Advancing the workforce will also require pipeline development for those who serve CYSHCN and strategies to ensure that they are adequately paid for the work they do.65 The examples in Table 4 represent promising small, important steps toward the envisioned future of health equity for CYSHCN.
Conclusions
In the envisioned future, the forces that create health disparities will be eliminated and all CYSHCN will have a fair and just opportunity to thrive. When threats to thriving are identified, programs, services, and supports specifically designed to advance health equity will be leveraged in a culturally responsive, child- and family-centered, evidence-informed, efficient, and goal-directed way. Although this envisioned future currently is an aspiration, a more equitable future is within the nation’s grasp by advancing equity in the policies, research, and practice of delivering health and related services for CYSHCN.
Acknowledgment
We thank Drs. Reem Ghandour and Mary Kay Kenney for conducting and providing analyses of the National Survey of Children’s Health data included in this manuscript.
All authors made substantial contributions to conception and design, acquisition of data, or analysis and interpretation of data, were involved in drafting the article or revising it critically for important intellectual content, gave final approval of the version to be published, and all authors agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.
FUNDING: Funding for the publication of this article, including editorial support (review for formatting and consistency) for this article was funded by the US Department of Health and Human Services, Health Resources and Services Administration under contract number 75R60219D00014.
CONFLICT OF INTEREST DISCLOSURES: The authors have indicated they have no conflicts of interest to disclose.
The views expressed in this publication are solely the opinions of the authors and do not necessarily reflect the official policies of the US Department of Health and Human Services or the Health Resources and Services Administration, nor does mention of the department or agency names imply endorsement by the US Government.
