For the last 2 decades, the construct of “special health care needs” has been a prominent component of analyzing child health.1 The Maternal and Child Health Bureau (MCHB), part of the Health Resources and Services Administration, defines children and youth with special health care needs (CYSHCN) as children who have or are at increased risk for chronic physical, developmental, behavioral, or emotional conditions (such as asthma, sickle cell disease, epilepsy, anxiety, autism, and learning disorders). By definition, CYSHCN also require health and related services of a type or amount beyond that generally required by children. Developed in the late 20th century, the CYSHCN designation has served researchers and policymakers by highlighting that children with chronic conditions and increased health care needs face similar challenges and experience common adverse outcomes.2 For example, CYSHCN continue to be much less likely than non-CYSHCN to flourish or to be fully engaged in school, and their caregivers are much less likely to be employed or to enjoy good physical or mental health.
To address these disparities in thriving, MCHB published the Blueprint for Change in Pediatrics in 2022 as a framework for improving outcomes for CYSHCN and their families.3 The culmination of a 2-year effort between MCHB and partners, including families, health care professionals and other experts in the field, the Blueprint offers high-level principles and specific strategies to improve health and social outcomes for some of our most vulnerable children and their families. At the core of the Blueprint is the commitment ensuring that every CYSHCN receives the health and related services they need to play, go to school, and become a healthy adult, as well as ensuring that caregivers and siblings are thriving too.
To reach every CYSHCN and their family, we need to count them accurately. The Children with Special Health Care Needs (CSHCN) Screener was developed in the 1990s to identify children with existing special health care needs at a population level.4 In this issue of Pediatrics, Black et al5 note that this definition-driven, operational approach to calculating the number of CYSHCN in MCHB’s National Survey of Child Health (NSCH) may undercount certain groups of children. If the calculation were expanded to include children whose caregivers report both a diagnosed condition and specific functional difficulty, regardless of designation by the CSHCN Screener, the US prevalence of CYSHCN would increase from 19% to 25%. We would also include proportionately more children who are Hispanic, uninsured, or live in households with lower educational attainment. Including these children in our calculation of CYSHCN would provide researchers and policy leaders with a broader and more inclusive population to consider in their work.
If the calculation of CYSHCN were to change as Black and colleagues outline, importantly, many aspects of our current approach to serving CYSHCN and supporting their families would not change. First, the general concept of CYSHCN would remain an essential lever for understanding how to tailor child health policy; the decades old MCHB definition will remain the same. Additionally, although the NSCH does collect data for individual children, the data are completely anonymized and can only be used, by law, to produce population-level estimates. Thus, agencies and organizations would continue, as they do now, to use a variety of criteria based on the purposes and resources of each program to decide which specific group of children qualify. Lastly, the CSHCN Screener would continue to be a simple, quick tool for researchers and others who need to identify certain populations through caregiver reports. For scholars or public health officials seeking national or state benchmarks for populations defined by the CSHCN Screener, NSCH data could continue to be analyzed by the original calculation of CYSHCN identified by the CSHCN Screener alone.
Another concern about changes to the calculation of CYSHCN is that the category could become so broad that it would lose usefulness as a policy or research tool. One solution is to keep the broader category of CYSHCN but also identify policy-relevant subgroups, such as children with medical complexity, or children whose primary specific needs are related to learning, behavior, or emotional well-being.6 This approach would allow researchers and policymakers to combine or disaggregate CYSHCN data as appropriate for specific purposes. For example, the authors of a recent study7 using state-level data from the NSCH noted the paradoxical effects of state Medicaid rules for network adequacy standards on CYSHCN. The authors analyzed the results of “time and distance” policies, which were developed to improve access to specialists, on the broader CYSHCN group. If, in the future, MCHB systematically focused on specific subgroups of the CSYCHN population, the authors of such research would be more likely to focus on differences among children with complex medical needs or, perhaps, those with primary behavioral or emotional needs. Such research results would allow health care leaders to fine-tune policy to improve access to care.
Another consideration as we rethink categories of child health is how best to include both social determinants of health and health-related social needs in policy and research. Such factors are critical because they are both a cause and consequence of special health care needs. Bethell et al8 suggest treating such factors as different dimensions along with medical care needs, which is consistent with some state and organizational practices. For example, there are state Medicaid programs that adjust care coordination needs according to the child’s medical needs, the family’s social needs, or a combination of both. Whatever approach we use to measure health and well-being needs to acknowledge social determinants of health or health-related social needs as both major upstream factors that impact health and as opportunities for intervention.
There are multiple ways to categorize child health to meet different policy and research goals, and surveys such as the NSCH are essential tools to gauge the health of our nation’s children, track their progress, and provide insights into how to chart a path forward to improve outcomes that matter to families and the nation. MCHB looks forward to working with youth, families, scholars, and policy leaders in the coming months and years to rethink how we think, analyze, and talk about ways to conceptualize and measure child health for the next generation.
Dr Brosco conceptualized and drafted the initial manuscript and critically reviewed and revised the manuscript; Drs Ghandour, Payne, and Houtrow critically reviewed and revised the manuscript; and all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
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.
COMPANION PAPER: A companion to this article can be found online at www.pediatrics.org/cgi/doi/10.1542/peds.2023-065131.
FUNDING: No external funding.
CONFLICT OF INTEREST DISCLOSURES: The authors have indicated they have no potential conflicts of interest relevant to this article to disclose.
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