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Article| Volume 37, ISSUE 2, P106-116, March 2023

The Impact of COVID-19 on Systems of Care for Children and Youth With Special Health Care Needs

Published:September 21, 2022DOI:https://doi.org/10.1016/j.pedhc.2022.09.009
The Impact of COVID-19 on Systems of Care for Children and Youth With Special Health Care Needs
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      Introduction

      This article describes the challenges and opportunities that the COVID-19 pandemic presented for providing and coordinating care for children and youth with special health care needs (CYSHCN) who rely on a diverse array of systems to promote their health, education, and well-being.

      Method

      Peer-reviewed published literature and reports from the national government and nonprofit organizations that advocate for CYSHCN were examined, particularly concerning systems that impacted CYSHCN during COVID-19.

      Results

      Pre-COVID-19, CYSHCN and their families faced challenges accessing and coordinating care across diverse systems. COVID-19 exacerbated these challenges because of disruptions in care and services that negatively impacted CYSHCN. COVID-19 also highlighted opportunities for positive change and care innovations.

      Discussion

      Understanding the systems of care that CYSHCN rely on and the effects of COVID-19 on these systems can enhance access to and quality of care. Recommendations are made for practice, leadership, research, and policy.

      KEY WORDS

      INTRODUCTION

      The COVID-19 pandemic brought unprecedented challenges for children and youth with special health care needs (CYSHCN) and their families. The unpredictable nature of the virus constantly changed the playing field that spanned health care, education, family, and community systems. For decades, CYSHCN and their families and caregivers have relied on all four of these systems to meet their myriad and often complex needs. Before COVID-19, children and families faced gaps in these systems and challenges coordinating care between individuals and professionals. The emergence of COVID-19 revealed the longstanding stress points and gaps in these systems while presenting new opportunities for change and improved care.
      The COVID-19 pandemic disrupted care for CYSHCN differently than it affected other children. CYSHCN often rely on more systems of care for their health, development, and well-being and have more needs for in-person direct care and coordination than typically developing children. Although many CYSHCNs have resumed activities that halted during the pandemic, such as attending school or daycare, the consequences of prolonged disruptions to many systems of care continue to reverberate and pose challenges for all involved.
      In addition to COVID-19, this paper is timely because of other recent events and trends: (1) the 2022 release of two seminal reports from the federal government about CYSHCN, (2) sharp increases in the prevalence of mental/behavioral health mental health conditions among the nation's youth, and (3) mounting evidence of disparities in health and health between CYSHCN and their peers.
      In this article we describe the challenges and opportunities that COVID-19 presented in providing and coordinating care for CYSHCN, who rely on diverse systems to promote their health, education, and well-being. We start with a background section on the demographics of CYSHCN and an overview of the major frameworks that guided our work. Next, we discuss the four major systems (health care, education, family, and community) that these children and their families depend on. We address the cross-cutting systems issues and challenges with coordination and collaboration among systems. Finally, we conclude with recommendations for practice, leadership, research, and policy, especially in anticipation of any major disruptions to public health and the well-being of CYSHCN.

      BACKGROUND ON CYSHCN

      The U.S. Maternal and Child Health Bureau (MCHB) defines CYSHCN as “children who have or are at increased risk for chronic physical, developmental, behavioral, or emotional conditions; they require health and related services of a type or amount beyond that required by children generally” (

      Health Resources and Services Administration, Maternal & Child Health Bureau (HRSA & MCHB). (2022). Children and youth with special health care needs. NSCH Data Brief. https://mchb.hrsa.gov/sites/default/files/mchb/programs-impact/nsch-data-brief-children-youth-special-health-care-needs.pdf

      ; Table 1). In 2019–20, nearly one in five children (19.4%; 14.1 million children) in the United States had a special health care need. More than one in four households with children (28.6%) had at least one CYSHCN. Rates of CYSHCN are particularly high (36.3%) among children with two or more adverse childhood experiences (ACEs), non-Hispanic Black children (23.3%), and children living in poverty (22.8%; HRSA & MCHB, 2022).
      Table 1Definitions of children and youth with special health care needs
      TermDefinitionSource
      Children/youth with Special Health Care NeedsChildren who have or are at increased risk for chronic physical, developmental, behavioral, or emotional conditions; require health and related services of a type or amount beyond that required by children generallyHealth Resources and Services Administration, Maternal & Child Health Bureau (2022)
      Children/youth with chronic health conditionsChronic refers to a health condition that lasts anywhere from 3 months to a lifetime

      American Academy of Pediatrics. (2022). Chronic conditions.https://www.healthychildren.org/English/health-issues/conditions/chronic/Pages/default.aspx?_ga=2.46326055.1687126562.1653941757-693114751.1653941757&_gl=1*g4pksg*_ga*NjkzMTE0NzUxLjE2NTM5NDE3NTc.*_ga_FD9D3XZVQQ*MTY1Mzk0NTgwNS4yLjEuMTY1Mzk0NTg2MS4w%20%20AAP

      Children/youth with developmental disabilities“Developmental disabilities are a group of lifelong conditions because of an impairment in physical, learning, language, or behavior areas”
      • Zablotsky B.
      • Black L.I.
      • Maenner M.J.
      • Schieve L.A.
      • Danielson M.L.
      • Bitsko R.H.
      • Blumberg S.J.
      • Kogan M.D.
      • Boyle C.A.
      Prevalence and trends of developmental disabilities among children in the United States: 2009–2017.
      Pediatrics. 2019; 144e20190811
      , p. 2).
      Children/youth with medical complexityA subset of children with special health care needs who are the “most medically fragile and have the most intensive health care needs”. . . (extra time, expertise, and resources) “to achieve optimal health outcomes”
      • Cohen E.
      • Kuo D.Z.
      • Agrawal R.
      • Berry J.G.
      • Bhagat S.K.
      • Simon T.D.
      • Srivastava R.
      Children with medical complexity: An emerging population for clinical and research initiatives.
      Pediatrics. 2011; 127: 529-538
      , p. 259)
      Children/youth who depend on medical technology• A subset of children/youth with medical complexity

      • “Technology dependency refers to the use of (technological) medical devices without which—if they were to fail or be discontinued—adverse health consequences and hospitalization would likely follow”

      •Examples of medical technology are mechanical ventilators &enteral feeding devices
      • Elias E.R.
      • Murphy N.A.
      Council on Children with Disabilities
      Home care of children and youth with complex health care needs and technology dependencies.
      Pediatrics. 2012; 129: 996-1005
      p. 997)
      CYSHCN are nearly four times more likely than children and youth without special health care needs to have unmet health care needs. The most frequently reported reasons for unmet health care needs among CYSHCN were cost (48.9%) and lack of appointment availability (53.9%;

      Health Resources and Services Administration, Maternal & Child Health Bureau (HRSA & MCHB). (2022). Children and youth with special health care needs. NSCH Data Brief. https://mchb.hrsa.gov/sites/default/files/mchb/programs-impact/nsch-data-brief-children-youth-special-health-care-needs.pdf

      ).
      For purposes of this paper, we identify the following groups of CYSHCN: (1) children and youth with chronic health conditions, (2) children and youth with developmental disabilities, (3) children and youth with medical complexity, (4) children and youth who depend on medical technology, and (5) children and youth who are medically fragile (Table 1).

      Conceptual Frameworks

      A single framework was insufficient to guide our analysis of systems of care. Instead, we identified five relevant frameworks: (1) Complex Care Ecosystems (

      Humowiecki, M., Kuruna, T., Sax, R., Hawthorne, M., Hamblin, A., Turner, S., Mate, K., Sevin, C., & Cullen, K. (2018). Blueprint for Complex Care, Advancing the field of care for individuals with complex health and social needs. https://www.nationalcomplex.care/wp-content/uploads/2019/03/Blueprint-for-Complex-Care_UPDATED_030119.pdf

      ), (2) Whole School, Whole Community, and Whole Child (WSCC;

      Centers for Disease Control and Prevention. (2022). CDC healthy schools, Whole School, Whole Community, Whole Child (WSCC). https://www.cdc.gov/healthyschools/wscc/index.htm

      ), (3) Bronfenbrenner's Ecologic Systems Model (
      • Bronfenbrenner U.
      Ecological systems theory.
      in: Vasta R. Six theories of child development: Revised formulations and current issues. JAI Press, 1992: 187-249
      ;
      • Guy-Evans O.
      Bronfenbrenner’s ecological systems theory.
      Simple Psychology. 2020;
      https://www.simplypsychology.org/Bronfenbrenner.html
      ), (4) the

      Consensus Statement on the Core Tenets of Chronic Condition Management in Schools. (2021). https://downloads.aap.org/AAP/PDF/Consensus%20Statement%20-%20Core%20Tenets%20of%20CCMS%20%202021-08%20.pdf

      , and (5) the Blueprint for Change (
      • McLellan S.E.
      • Mann M.Y.
      • Scott J.A.
      • Brown T.W.
      A blueprint for change: Guiding principles for a system of services for children and youth with special health care needs and their families.
      Pediatrics. 2022; 149e20210561500
      ).
      The Complex Care Ecosystem from the National Center for Complex Health and Social Needs (

      Humowiecki, M., Kuruna, T., Sax, R., Hawthorne, M., Hamblin, A., Turner, S., Mate, K., Sevin, C., & Cullen, K. (2018). Blueprint for Complex Care, Advancing the field of care for individuals with complex health and social needs. https://www.nationalcomplex.care/wp-content/uploads/2019/03/Blueprint-for-Complex-Care_UPDATED_030119.pdf

      ; Figure 1) encompasses 10 systems for individuals of all ages with complex health and social needs. The framework builds on a shared vision of a transformed complex care ecosystem that “seamlessly integrate[s]” health and social services in local communities (p. 18). It is based on these premises: (1) current systems insufficiently address social determinants of health, (2) services and data are separated by system, (3) payment for care emphasizes volume over outcomes, and (4) the needs of individuals with complex needs are often unmet in health care systems that lack sufficient focus on person-centered care (

      Humowiecki, M., Kuruna, T., Sax, R., Hawthorne, M., Hamblin, A., Turner, S., Mate, K., Sevin, C., & Cullen, K. (2018). Blueprint for Complex Care, Advancing the field of care for individuals with complex health and social needs. https://www.nationalcomplex.care/wp-content/uploads/2019/03/Blueprint-for-Complex-Care_UPDATED_030119.pdf

      ).
      FIGURE 1
      FIGURE 1The complex care ecosystem.
      From

      Humowiecki, M., Kuruna, T., Sax, R., Hawthorne, M., Hamblin, A., Turner, S., Mate, K., Sevin, C., & Cullen, K. (2018). Blueprint for Complex Care, Advancing the field of care for individuals with complex health and social needs. https://www.nationalcomplex.care/wp-content/uploads/2019/03/Blueprint-for-Complex-Care_UPDATED_030119.pdf

      . This figure appears in color online at www.jpedhc.org.
      Under the complex care ecosystems framework, education falls under “other social services” and employment. However, for CYSHCN, education is a major system that should not be merged with other issues. To address this shortfall, we added a second model, the WSCC framework from the Centers for Disease Control and Prevention (

      Centers for Disease Control and Prevention. (2022). CDC healthy schools, Whole School, Whole Community, Whole Child (WSCC). https://www.cdc.gov/healthyschools/wscc/index.htm

      ; Figure 2). This framework is based on the (1) inextricable link between education and health for children's well-being, (2) the importance of communities and families in supporting children's health and education, and (3) growing emphasis on children's physical and psychosocial environments (

      Centers for Disease Control and Prevention. (2022). CDC healthy schools, Whole School, Whole Community, Whole Child (WSCC). https://www.cdc.gov/healthyschools/wscc/index.htm

      ; Figure 2).
      FIGURE 2
      FIGURE 2Whole School, Whole Community, Whole Child.
      From

      Centers for Disease Control and Prevention. (2022). CDC healthy schools, Whole School, Whole Community, Whole Child (WSCC). https://www.cdc.gov/healthyschools/wscc/index.htm

      . This figure appears in color online at www.jpedhc.org.
      Although the WSCC features schools and education more than the complex care systems model, it lacks an essential component: strong coordination among individuals and organizations within and across these systems. To address this shortfall, we introduce Bronfenbrenner's ecologic systems theory (
      • Bronfenbrenner U.
      Ecological systems theory.
      in: Vasta R. Six theories of child development: Revised formulations and current issues. JAI Press, 1992: 187-249
      ;
      • Guy-Evans O.
      Bronfenbrenner’s ecological systems theory.
      Simple Psychology. 2020;
      https://www.simplypsychology.org/Bronfenbrenner.html
      ; Figure 3). Bronfenbrenner identified concentric systems of a child's life. For example, the “microsystem” includes home, family, and school. As another example, the “mesosystem” in Bronfenbrenner's framework links two or more microsystems. It is a “system of microsystems” (
      • Bronfenbrenner U.
      Ecological systems theory.
      in: Vasta R. Six theories of child development: Revised formulations and current issues. JAI Press, 1992: 187-249
      , p. 227). Examples of linkages in the mesosystem include the connection between the child's teacher and family, health care clinicians and school personnel, and individuals and organizations in the communities and schools.
      FIGURE 3
      FIGURE 3Bronfenbrenner's Ecological Systems Theory.
      National Academies of Science, Medicine and Engineering
      Preventing bullying through science, policy, and practice.
      https://www.ncbi.nlm.nih.gov/books/NBK390413/
      Date: 2016
      Date accessed: October 20, 2022
      . This figure appears in color online at www.jpedhc.org.
      COVID-19 has drawn attention to the importance of services provided in schools for CYSHCN, especially those with chronic physical or mental health conditions. COVID-19 also raised awareness of the importance of partnerships among health care, public health, and social-service organizations to meet the needs of students with chronic health care conditions. To address these issues, seven national organizations “develop[ed] a common framework to guide an integrated, collective approach to chronic condition management in schools” (

      Consensus Statement on the Core Tenets of Chronic Condition Management in Schools. (2021). https://downloads.aap.org/AAP/PDF/Consensus%20Statement%20-%20Core%20Tenets%20of%20CCMS%20%202021-08%20.pdf

      , p. 3). The collaborating organizations identified seven key components of the core tenets: accessible, comprehensive, coordinated, culturally effective, equitable, evidence-based, and child -and family-centered. Under “comprehensive,” the stakeholders specified that students with chronic conditions should be supported “during emergencies and disasters (e.g., pandemics, natural disasters, lockdowns)” (p. 4).
      Many CYSHCNs, particularly those with increased medical complexity, have increased social needs necessitating nonclinical supports such as food assistance, supportive housing, and special education to thrive (
      • McLellan S.E.
      • Mann M.Y.
      • Scott J.A.
      • Brown T.W.
      A blueprint for change: Guiding principles for a system of services for children and youth with special health care needs and their families.
      Pediatrics. 2022; 149e20210561500
      ). Parents frequently serve as caregivers and care coordinators for CYSHCN. Navigating a fragmented system is frustrating and exhausting, particularly for families with low financial resources, food insecurity, housing, or transportation challenges (
      • McLellan S.E.
      • Mann M.Y.
      • Scott J.A.
      • Brown T.W.
      A blueprint for change: Guiding principles for a system of services for children and youth with special health care needs and their families.
      Pediatrics. 2022; 149e20210561500
      ).
      The MCHB's Blueprint for Change addresses these issues by identifying four critical areas: health equity, family/child quality of life, access to services, and finance for services (
      • Brown T.W.
      • McLellan S.E.
      • Scott J.A.
      • Mann M.Y.
      Introducing the Blueprint for Change: A national framework for a system of services for children and youth with special health care needs.
      Pediatrics. 2022; 149e20211056150
      ). The Blueprint for Change calls for a holistic, coordinated, and integrated approach to health care to help CYSHCN enjoy a full quality of life throughout their life span (
      • McLellan S.E.
      • Mann M.Y.
      • Scott J.A.
      • Brown T.W.
      A blueprint for change: Guiding principles for a system of services for children and youth with special health care needs and their families.
      Pediatrics. 2022; 149e20210561500
      , p. S722).
      Each framework, model, and tenet described above provide ways of conceptualizing the many systems of care that CYSHCNs rely on more than non-CYSHCNs and their families. The complexities, fragilities, and vulnerabilities of the systems were accentuated during COVID-19.

      HEALTH, EDUCATION, FAMILY, AND COMMUNITY SYSTEMS FOR CYSHCN DURING COVID-19

      To understand the depth and breadth of COVID-19’s impact on CYSHCN and their families, we discuss four systems—health care, education, family, and community. The connections between these systems vary across geographic locales. They depend on the political will and leadership of local and state child advocates both inside of government and in the community.

      Health Care Systems

      CYSHCNs are high pediatric health care service users and have been disproportionately impacted during the COVID-19 pandemic (
      • Baumbusch J.
      • Lloyd J.E.V.
      • Lamden-Bennett S.R.
      • Ou C.
      The unintended consequences of COVID-19 public health measures on health care for children with medical complexity.
      Child: Care, Health and Development. 2022; https://doi.org/10.1111/cch.12968
      ). Health care services such as primary care, specialty care, therapies (physical, occupational, speech), and mental health are the foundation of growth and development for CYSHCN. During the pandemic, many of these services were paused or curtailed. Public health measures, especially in the early months of the pandemic, limited access to in-person health care for CYSHCN, including preventive services (
      • Baumbusch J.
      • Lloyd J.E.V.
      • Lamden-Bennett S.R.
      • Ou C.
      The unintended consequences of COVID-19 public health measures on health care for children with medical complexity.
      Child: Care, Health and Development. 2022; https://doi.org/10.1111/cch.12968
      ;
      • Lebrun-Harris L.A.
      • Sappenfield O.R.
      • Warren M.D.
      Missed and delayed preventive health care visits among US children due to the COVID-19 pandemic.
      Public Health Reports. 2022; 137: 336-343
      ). Families of CYSHCN lost opportunities for developmental screening and monitoring and anticipatory guidance for safety (e.g., toddler safety, adolescent high-risk behaviors). In addition, many families avoided taking their child to the hospital or emergency department (ED) to evaluate health-related complications (
      • Baumbusch J.
      • Lloyd J.E.V.
      • Lamden-Bennett S.R.
      • Ou C.
      The unintended consequences of COVID-19 public health measures on health care for children with medical complexity.
      Child: Care, Health and Development. 2022; https://doi.org/10.1111/cch.12968
      ).
      When primary care clinics closed, many specialty clinics provided well-child care and COVID-19 prevention advice to families of these vulnerable children. Specialty clinic providers often became the medical home or primary care providers. CYSHCN, with high acuity or medically complex needs, require ongoing medical management to optimize health and minimize the risk of health-related complications. Provision of therapies (e.g., physical, occupational, speech, and/or respiratory) that maintain or restore function for many CYSHCNs increased in specialty clinic settings because in-school and in-home services were unavailable (
      • Coller R.J.
      • Kelly M.M.
      • Ehlenbach M.L.
      • Goyette E.
      • Warner G.
      • Chung P.J.
      Hospitalizations for ambulatory care-sensitive conditions among children with chronic and complex diseases.
      Journal of Pediatrics. 2018; 194: 218-224
      ).
      Telehealth visits surged as an alternative to in-person visits during the pandemic (
      • Garfan S.
      • Alamoodi A.H.
      • Zaidan B.B.
      • Al-Zobbi M.
      • Hamid R.A.
      • Alwan J.K.
      • Ahmaro I.Y.Y.
      • Khalid E.T.
      • Jumaah F.M.
      • Albahri O.S.
      • Zaidan A.A.
      • Albahri A.S.
      • Al-Qaysi Z.T.
      • Ahmed M.A.
      • Shuwandy M.L.
      • Salih M.M.
      • Zughoul O.
      • Mohammed K.I.
      • Momani F.
      Telehealth utilization during the Covid-19 pandemic: A systematic review.
      Computers in Biology and Medicine. 2021; 138104878
      ). Although telehealth may not be optimal for CYSHCN because a physical examination is needed for a complete and accurate assessment, it has certain advantages. An integrative review by
      • Ferro F.
      • Tozzi A.E.
      • Erba I.
      • Dall'Oglio I.
      • Campana A.
      • Cecchetti C.
      • Geremia C.
      • Rega M.L.
      • Tontini G.
      • Tiozzo E.
      • Gawronski O.
      Impact of telemedicine on health outcomes in children with medical complexity: An integrative review.
      European Journal of Pediatrics. 2021; 180: 2389-2400
      described how telemedicine reduced unplanned hospitalizations, health care costs, financial burdens for families, and increased caregiver satisfaction with health care for medically complex children (
      • Ferro F.
      • Tozzi A.E.
      • Erba I.
      • Dall'Oglio I.
      • Campana A.
      • Cecchetti C.
      • Geremia C.
      • Rega M.L.
      • Tontini G.
      • Tiozzo E.
      • Gawronski O.
      Impact of telemedicine on health outcomes in children with medical complexity: An integrative review.
      European Journal of Pediatrics. 2021; 180: 2389-2400
      ).
      Seeking health care was often influenced by family factors. For example, families with two parents had lower odds of avoiding the ED for situations in which they would have brought the child in pre-COVID-19. This suggests that families without dual parent support could not easily manage the logistics of an ED visit during pandemic isolation (
      • Baumbusch J.
      • Lloyd J.E.V.
      • Lamden-Bennett S.R.
      • Ou C.
      The unintended consequences of COVID-19 public health measures on health care for children with medical complexity.
      Child: Care, Health and Development. 2022; https://doi.org/10.1111/cch.12968
      ). In addition, some parents (36.5%) avoided taking their children to the ED because of fear that they or their child might contract COVID-19 (
      • Baumbusch J.
      • Lloyd J.E.V.
      • Lamden-Bennett S.R.
      • Ou C.
      The unintended consequences of COVID-19 public health measures on health care for children with medical complexity.
      Child: Care, Health and Development. 2022; https://doi.org/10.1111/cch.12968
      ;
      • Radhakrishnan L.
      • Leeb R.T.
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      • Gates A.
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      • Smith A.R.
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      • Sheppard M.
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      MMWR. Morbidity and Mortality Weekly Report. 2022; 71: 319-324
      ).
      Another family factor for CYSHCN during the pandemic was that typically only one parent was permitted at the bedside in hospital units or EDs. The parent at the bedside lacked the support of other family members as they dealt with the stress of caring for and monitoring a hospitalized child. In addition, extended family and community support were often restricted.

      Behavioral and mental health

      For children and youth, mental health is the overall wellness or how one thinks and regulates feelings and behaviors (or emotional, social, and behavioral functioning). “A mental illness, or mental health disorder, is defined as patterns or changes in thinking, feeling or behaving that cause distress or disrupt a person's ability to function” (

      Mayo Clinic Staff. (n.d) 2022. Mental illness in children: Know the signs. https://www.mayoclinic.org/healthy-lifestyle/childrens-health/in-depth/mental-illness-in-children/art-20046577

      , para. 2). Mental health disorders in children are “delays or disruptions in developing age-appropriate thinking, behaviors, social skills, or regulation of emotions” (

      Mayo Clinic Staff. (n.d) 2022. Mental illness in children: Know the signs. https://www.mayoclinic.org/healthy-lifestyle/childrens-health/in-depth/mental-illness-in-children/art-20046577

      , para. 3).
      The disruption of health care services and families’ daily lives in the pandemic has intensified the risk of ACEs for CYSHCN (

      Health Resources and Services Administration, Maternal & Child Health Bureau (HRSA & MCHB). (2022). Children and youth with special health care needs. NSCH Data Brief. https://mchb.hrsa.gov/sites/default/files/mchb/programs-impact/nsch-data-brief-children-youth-special-health-care-needs.pdf

      ;

      National Governors Association. (2020). The future of state telehealth policy.https://www.nga.org/wp-content/uploads/2020/11/The-Future-of-State-Telehealth-Policy.pdf

      ). ACEs are potentially traumatic events that can affect a person's health, well-being, and success into adulthood. The pandemic has also accentuated a previously existing mental health crisis and the lack of resources available to patients and families (

      Centers for Disease Control and Prevention. (2022). CDC healthy schools, Whole School, Whole Community, Whole Child (WSCC). https://www.cdc.gov/healthyschools/wscc/index.htm

      ).
      The needs of CYSHCN with existing behavioral and/or mental health diagnoses were confounded by the pandemic (
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      Mental and social health of children and adolescents with pre-existing mental or somatic problems during the COVID-19 pandemic lockdown.
      Front Psychiatry. 2021; 12692853
      ), with many experiencing an increase in emotional distress, behavioral health concerns, and deterioration in mental health (
      • Brik A.B.
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      ;
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      • Carey K.
      • Gates A.
      • Holland K.M.
      • Hartnett K.P.
      • Kite-Powell A.
      • DeVies J.
      • Smith A.R.
      • van Santen K.L.
      • Crossen S.
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      • Lane R.I.
      • Njai R.
      • Johnson A.G.
      • Winn A.
      • Kirking H.L.
      • Anderson K.N.
      Pediatric emergency department visits associated with mental health conditions before and during the COVID-19 Pandemic- United States, January 2019 – January 2022.
      MMWR. Morbidity and Mortality Weekly Report. 2022; 71: 319-324
      ). Some children became more socially isolated, mainly because of the disruption of school life. Other children suffer because of the loss of a primary or secondary caregiver due to COVID-19 illness or death, further impacting their mental health (

      Heard, A. (2022). State efforts to address ACEs and trauma and build resilience. https://www.nga.org/news/commentary/state-efforts-to-address-aces-and-trauma-and-build-resilience/

      ). In addition, comparison studies before and during the pandemic indicate poorer mental well-being for CYSHCN following the pandemic, highlighting the moderating relationship of COVID-19 lockdown procedures on CYSHCN mental health (
      • Hoefnagels J.W.
      • Schoen A.B.
      • van der Laan S.E.I.
      • Rodijk L.H.
      • van der Ent C.K.
      • van de Putte E.M.
      • Dalmeijer G.W.
      • Nijhof S.L.
      The impact of the COVID-19 outbreak on mental wellbeing in children with a chronic condition compared to healthy peers.
      International Journal of Environmental Research and Public Health. 2022; 19: 2953
      ). In particular, between 2019 and 2021, there were increases in mental health ED visits in the United States for eating disorders, tic disorders, and obsessive-compulsive disorders. Moreover, there was a rise in psychiatric boarding (stays in the ED or medical-surgical units awaiting psychiatric unit admission) for children and youth during the pandemic, with 50.4% requiring more than 2 days of boarding, indicating the dire lack of inpatient psychiatric beds for this population (
      • Ibeziako P.
      • Kaufman K.
      • Scheer K.N.
      • Sideridis G.
      Pediatric mental health presentations and boarding: First year of the COVID-19 pandemic.
      Hospital Pediatrics. 2022; 12: 751-760
      ).
      Complicating this crisis was the mental health of parents with CYSHCN—a vulnerable group. Parental COVID stressors, often from burnout and parenting experiences of CYSHCN, were associated with increased anxiety levels and sleep problems (
      • Wauters A.
      • Vervoort T.
      • Dhondt K.
      • Soenens B.
      • Vansteenkiste M.
      • Morbée S.
      • Waterschoot J.
      • Haerynck F.
      • Vandekerckhove K.
      • Verhelst H.
      • Van Aken S
      • Raes A.
      • Schelstraete P.
      • Walle J.V.
      • Van Hoecke E.
      Mental health outcomes among parents of children with a chronic disease during the COVID-19 pandemic: The role of parental burn-out.
      Journal of Pediatric Psychology. 2022; 47: 420-431
      ).
      Another factor that exacerbated the crisis in mental health care for children pre-COVID-19 was the shortage of mental health providers; this left pediatric primary care and specialty care providers filling the service gap.
      • Chien A.T.
      • Leyenaar J.
      • Tomaino M.
      • Woloshin S.
      • Leininger L.
      • Barnett E.R.
      • McLaren J.L.
      • Meara E.
      Difficulty obtaining behavioral health services for children: A national survey of multiphysician practices.
      Annals of Family Medicine. 2022; 20: 42-50
      found that more than 85% of the 1,410 multiphysician primary and multispecialty pediatric practices surveyed had difficulty obtaining advice or services regarding pediatric behavioral health care, such as medication advice or evidence-based psychotherapy.
      Some organizations developed innovative solutions to support patients and families of CYSHCN who require mental health support (
      • Cutler G.J.
      • Bergmann K.R.
      • Doupnik S.K.
      • Hoffmann J.A.
      • Neuman M.I.
      • Rodean J.
      • Zagel A.L.
      • Zima B.T.
      Pediatric mental health emergency department visits and access to inpatient care: A crisis worsened by the COVID-19 pandemic.
      Academic Pediatrics. 2022; 22: 889-891
      ). One Children's Hospital integrated mental and behavioral health clinicians into the primary care setting and offered walk-in mental health care to allow for early detection and increased access to these services (

      Children's Wisconsin. (2022). “60 Minutes” features innovative Children's Wisconsin mental health programs.https://childrenswi.org/newshub/stories/60-minutes-features-childrens-wisconsin-mental-health-efforts

      ).
      School-based health centers are another innovative solution for mental health care delivery for CYSHCN. Most of these centers found the lack of staff and in-person access challenging during the pandemic, prompting them to implement telehealth to sustain service provision (
      • Sullivan E.
      • Geierstanger S.
      • Soleimanpour S.
      Mental health service provision at school-based health centers during the COVID-19 pandemic: Qualitative findings from a national listening session.
      Journal of Pediatric Health Care. 2022; 36: 358-367
      ). Future options for expanding access to mental health for CYSHCN include offering mental/behavioral health services in specialty clinics.

      Education Systems

      COVID-19 amplified the hurdles that CYSHCN and their parents faced in navigating federal, state, and local policies to ensure their children received an education that enabled them to develop to the best of their potential. It also provided a window of opportunity for local and state education policymakers to provide resources for a student population that the education system had often failed to adequately address.
      Before COVID-19, CYSHCN faced challenges as they strived to learn in schools, at home, and in other educational settings (

      Rosenkranz, H. (2021). Special education. http://library.cqpress.com/cqresearcher/cqresrre2021061100

      ). For example, some children require medication or treatments while they attend school. Others have fragile medical conditions, placing them at risk for infections and exacerbations of their conditions in-school settings, prompting parents to prefer that their children receive education at home.
      Approximately 17% of all children aged 3–17 years have one or more developmental disabilities (
      • Cogswell M.E.
      • Coil E.
      • Tian L.H.
      • Tinker S.C.
      • Ryerson A.B.
      • Maenner M.J.
      • Rice C.E.
      • Peacock G.
      Health needs and use of services among children with developmental disabilities—United States, 2014–2018.
      MMWR. Morbidity and Mortality Weekly Report. 2022; 71: 453-458
      ), such as attention deficit hyperactivity disorder or autism spectrum disorder. These disabilities are often associated with physical, cognitive, sensory, or intellectual difficulties and mental and behavioral health challenges.

      Federal education policies

      Two major federal laws address special education for children: (1) the Individuals with Disabilities Education Act (IDEA) and (2) Section 504 of the Rehabilitation Act. The IDEA (P.L.94-120), enacted in 1975, requires all eligible children with disabilities to receive a free appropriate public education (FAPE) that “meets their unique needs and prepares them for further education, employment, and independent living” (

      Department of Education. (2017). IDEA: Individuals with disabilities act, sec 3001 purposes. https://sites.ed.gov/idea/regs/b/a/300.1

      ). Infants and toddlers from birth through age 2 with disabilities and their families receive early intervention services under Part C of the IDEA. Children and youth aged 3 to 21 years receive special education and related services under Part B of the law. As of 2018–19, 7.5 million infants, toddlers, and youth with disabilities received special education services. Under the IDEA, each child is required to have an individualized education program (IEP), which is a written statement of how the child's disability affects their involvement and progress in the general education curriculum and includes measurable annual academic and functional goals.
      The Rehabilitation Act of 1973, section 504, protects the rights of individuals with disabilities in programs that receive federal financial assistance under the Department of Education (DOE). In contrast to the IDEA, which focuses on special education for children with disabilities, the Rehabilitation Act, section 504, is a federal civil-rights law to protect all individuals with disabilities in DOE programs. Recipients of section 504 funds include public school districts, institutions of higher education, and other state and local education agencies.
      Although both 504 plans and IEPs provide guidance to school personnel and parents regarding education for children with disabilities, they differ in several ways. First, the IDEA limits disabilities to specific conditions, whereas section 504 has a broader definition of a disability. Second, the IDEA focuses on students’ special education needs, whereas section 504 addresses how school personnel must modify the student's environment to help the student with specific learning needs. Examples include installing handrails on steps, moving inaccessible classrooms to another location, and seating students with attention deficit hyperactivity disorder in the front and center of the classroom to minimize distractions. Third, both laws require schools to provide a FAPE to eligible students, but the IDEA requirements are more detailed than those of section 504 (

      The Understood Team. (2022). The difference between IEPs and 504 plans. https://www.understood.org/en/articles/the-difference-between-ieps-and-504-plans

      ).
      As schools reopened in 2021, diverse stakeholders raised important questions about how to interpret and implement the IDEA, given the interruptions and lapses in implementing IEPs. Many CYSHCN experienced setbacks in their cognitive, social, emotional, and physical abilities during the pandemic and/or faced new challenges with their health care or family situations. In response, the DOE issued guidance documents “to clarify that regardless of the COVID-19 pandemic, or the mode of instruction, children with disabilities are entitled to FAPE, and infants and toddlers with disabilities and their families to appropriate IDEA Part C services” (

      Department of Education., & Office of Special Education and Rehabilitative Services. (2021). Return to school roadmap: Development and implementation of individualized education programs in the least restrictive environment under the Individuals with Disabilities Act. https://sites.ed.gov/idea/files/rts-iep-09-30-2021.pdf

      , p. 10). The DOE documents included guidance on “social, emotional, behavioral and mental health needs of children with a disability” (p. 15) and “school-related health needs of children with disabilities with underlying medical conditions” (p. 19).
      Regarding state or local jurisdictions that had instituted policies that were “inconsistent with CDC's COVID-19 prevention and risk reduction strategies,” the DOE reiterated the IDEA's requirements that IEP teams identify services needed to provide a child with a disability a FAPE in the least restrictive environment. The DOE also confirmed that school personnel were required to propose an appropriate educational placement that “meets the child's school-related health needs” (

      Department of Education., & Office of Special Education and Rehabilitative Services. (2021). Return to school roadmap: Development and implementation of individualized education programs in the least restrictive environment under the Individuals with Disabilities Act. https://sites.ed.gov/idea/files/rts-iep-09-30-2021.pdf

      , p. 19–20). The DOE guidance documents are useful for all health care and education personnel who work with children and youth with disabilities and other special health care needs during and after any disruptions to a child's education, including and not limited to COVID-19. They also are useful for understanding the rights and responsibilities of children, families, and school personnel in implementing the IDEA.
      The American Rescue Plan (P.L.117–2), enacted on March 11, 2021, provided almost $125 billion for education, most of it going to local school districts with a focus on advancing education equity (

      The White House. (2022). Fact sheet: How the American Rescue Plan is keeping America's schools open safely, combatting learning loss, and addressing student mental health.https://www.whitehouse.gov/briefing-room/statements-releases/2022/03/11/fact-sheet-how-the-american-rescue-plan-is-keeping-americas-schools-open-safely-combating-learning-loss-and-addressing-student-mental-health/#:∼:text=The%20ARP%20provides%20a%20historic,learning%20loss%20and%20mental%20health

      ). These funds can support activities that help students with disabilities and other special health care needs.

      Other school service disruptions because of COVID-19

      In addition to education services provided to eligible children under the IDEA and section 504, millions of students rely on school-based services for health care, nutrition, and social services. For example, school-based health centers provide primary and preventive care for six million students, many of whom are from low-income and rural families (
      • Sullivan E.
      • Geierstanger S.
      • Soleimanpour S.
      Mental health service provision at school-based health centers during the COVID-19 pandemic: Qualitative findings from a national listening session.
      Journal of Pediatric Health Care. 2022; 36: 358-367
      ). Approximately 35 million students live in low-income families and receive daily nutritional breakfasts and/or lunches through school or child care programs. Eighty percent of children with mental and behavioral health needs receive needed services in schools. School closures created disruptions in these and other services (
      • Masonbrink A.R.
      • Hurley E.
      Advocating for children during the COVID-19 school closures.
      Pediatrics. 2020; 146e20201440
      ) and pointed to the need for system leaders to prepare for future closures and interruptions with school-based services.
      In education settings nationwide, school nurses have had a longstanding and crucial role in caring for CYSHCN. COVID-19 required school nurses to change their priorities and assume additional responsibilities, such as conducting contact tracing, enforcing general COVID protocols, and providingCOVID-19education to students, staff, and families (
      • Barbee-Lee M.
      • Seymour K.
      • Hett A.L.
      • Norris G.
      • Stack S.
      • Cartier A.
      • Haycox P.
      • Armstrong L.
      • Herbert L.
      School nursing in a pandemic: Striving for excellence in Santa Fe public schools.
      NASN School Nurse. 2021; 36: 276-283
      ). With only 39% of schools having a full-time school nurse, COVID exacerbated the existing school health personnel crisis, which resulted in the lack of optimal health services for many children, especially CYSHCN (
      • Vestal C.
      School nurse deficit deepens as states seek relief.
      Pew Charitable Trusts. 2021;
      https://www.pewtrusts.org/en/research-and-analysis/blogs/stateline/2021/10/26/school-nurse-deficit-deepens-as-states-seek-relief#:∼: text=But%20with%20just%20under%2096%2C000National %20Association %20of%20School%20Nurses
      ).

      Family Systems

      Family members’ perspectives are essential because they are partners in health care system development and care delivery for CYSHCN (
      • Allshouse C.
      • Comeau M.
      • Rodgers R.
      • Wells N.
      Families of children with medical complexity: A view from the front lines.
      Pediatrics. 2018; 141: S195-S201
      ;
      • Coleman C.L.
      • Morrison M.
      • Perkins S.K.
      • Brosco J.P.
      • Schor E.L.
      Quality of life and well-being for children and youth with special health care needs and their families: A vision for the future.
      Pediatrics. 2022; 149: S1-S8
      ). Their pivotal roles and challenges were made glaringly clear during the COVID-19 pandemic when families of CYSHCN faced the monumental task of navigating the turbulent waters of closed health care and therapy clinics. Initially, access to services was prohibited or curtailed (
      • Baumbusch J.
      • Lloyd J.E.V.
      • Lamden-Bennett S.R.
      • Ou C.
      The unintended consequences of COVID-19 public health measures on health care for children with medical complexity.
      Child: Care, Health and Development. 2022; https://doi.org/10.1111/cch.12968
      ). Over time, care shifted to virtual telehealth video-chat visits (
      • Jeste S.
      • Hyde C.
      • Distefano C.
      • Halladay A.
      • Ray S.
      • Porath M.
      • Wilson R.B.
      • Thurm A.
      Changes in access to educational and healthcare services for individuals with intellectual and developmental disabilities during COVID-19 restrictions.
      Journal of Intellectual Disability Research. 2020; 64: 825-833
      ;
      • Lieneck C.
      • Weaver E.
      • Maryon T.
      Outpatient telehealth implementation in the United States during the COVID-19 globalpandemic: A systematic review.
      Medicina. 2021; 57: 462
      ). Although 72% of families reported a preference for these new modes of care (
      • Baumbusch J.
      • Lloyd J.E.V.
      • Lamden-Bennett S.R.
      • Ou C.
      The unintended consequences of COVID-19 public health measures on health care for children with medical complexity.
      Child: Care, Health and Development. 2022; https://doi.org/10.1111/cch.12968
      ), the reliance on telehealth exposed a digital divide that further widened care inequities and spotlighted the importance of examining social determinants of health concomitantly with care delivery for CYSHCN (
      • Curfman A.
      • Hackell J.M.
      • Herendeen N.E.
      • Alexander J.
      • Marcin J.P.
      • Moskowitz W.B.
      • Bodnar C.E.R.
      • Simon H.K.
      • McSwain S.D.
      Section on Telehealth Care Committee on Practice and Ambulatory Medicine, Committee on Pediatric Workforce
      Telehealth: Opportunities to improve access, quality, and cost in pediatric care.
      Pediatrics. 2022; 149e2021056035https://doi.org/10.1542/peds.2021-056035
      ).
      Parents of CYSHCN had to make tough decisions regarding accessing services for their CYSHCN. Consequently, there were missed or postponed outpatient visits (
      • Lieneck C.
      • Weaver E.
      • Maryon T.
      Outpatient telehealth implementation in the United States during the COVID-19 globalpandemic: A systematic review.
      Medicina. 2021; 57: 462
      ).
      • Jeste S.
      • Hyde C.
      • Distefano C.
      • Halladay A.
      • Ray S.
      • Porath M.
      • Wilson R.B.
      • Thurm A.
      Changes in access to educational and healthcare services for individuals with intellectual and developmental disabilities during COVID-19 restrictions.
      Journal of Intellectual Disability Research. 2020; 64: 825-833
      found that at the start of the pandemic, 30% of children with a genetic diagnosis, autism, epilepsy, or neurodevelopmental disorder, including developmental delay or intellectual disability, lost all therapy services (i.e., occupational therapy, physical therapy, speech). Seventy-four percent lost access to at least some educational services or one therapy (
      • Jeste S.
      • Hyde C.
      • Distefano C.
      • Halladay A.
      • Ray S.
      • Porath M.
      • Wilson R.B.
      • Thurm A.
      Changes in access to educational and healthcare services for individuals with intellectual and developmental disabilities during COVID-19 restrictions.
      Journal of Intellectual Disability Research. 2020; 64: 825-833
      ). Families of CYSHCN missed preventive health care visits because of structural barriers, such as the inability to find child care, their fear of contracting COVID-19 or needing to care for other family members diagnosed with the virus (
      • Liu S.
      • Lombardi J.
      • Fisher P.A.
      The COVID-19 pandemic impact on households of young children with special healthcare needs.
      Journal of Pediatric Psychology. 2022; 47: 158-170
      ).
      Families also faced disruptions related to homecare services, such as delays in obtaining durable medical and personal protective equipment (
      • Agoratus L.
      How COVID-19 affects children who are medically complex.
      Exceptional Parent. 2022; 52: 58-59
      ;
      • Liu S.
      • Lombardi J.
      • Fisher P.A.
      The COVID-19 pandemic impact on households of young children with special healthcare needs.
      Journal of Pediatric Psychology. 2022; 47: 158-170
      ). In addition, many CYSHCNs experienced delayed hospital discharges because of home health care staff shortages (
      • Agoratus L.
      How COVID-19 affects children who are medically complex.
      Exceptional Parent. 2022; 52: 58-59
      ). The pandemic worsened the prepandemic home health care nursing shortages in which 68.5% of new patients and 9.2% of existing patients experienced discharge delays because of a lack of home nursing support (
      • Maynard R.
      • Christensen E.
      • Cady R.
      • Jacob A.
      • Ouellette Y.
      • Podgorski H.
      • Schiltz B.
      • Schwantes S.
      • Wheeler W.
      Home health care availability and discharge delays in children with medical complexity.
      Pediatrics. 2019; 143e20181951
      ). These discharge delays increased hospital length of stay, inpatient costs, exposure to infections, and patient and family stress.
      Social determinants of health (SDOH) “conditions in the environments in which people are born, live, learn, work, play, worship, and age that affect a wide range of health, functioning, and quality-of-life outcomes and risks” (

      Centers for Disease Control and Prevention. (2021). Social determinants of health: Know what affects health https://www.cdc.gov/socialdeterminants/index.htm

      , para. 1), played a major role in families’ navigation through the pandemic. CYSHCN are more negatively impacted by the adverse effects of SDOH (
      • McLellan S.E.
      • Mann M.Y.
      • Scott J.A.
      • Brown T.W.
      A blueprint for change: Guiding principles for a system of services for children and youth with special health care needs and their families.
      Pediatrics. 2022; 149e20210561500
      ) than non-CYSHCN. Food is a key social determinant of health (

      Ullmann, H., Weeks, J. D., & Madans, J. H. (2022). Children living in households that experienced food insecurity: United States, 2019–2020.https://www.cdc.gov/nchs/data/databriefs/db432.pdf

      ). In 2019–20, more families with CYSHCN lived in food insecure households than those without CYSHCN (19.3% vs. 9.8%); rates were particularly high in Black, non-Hispanic (18.8%), and Hispanic children (15.7%) than in White children (6.5%;

      Ullmann, H., Weeks, J. D., & Madans, J. H. (2022). Children living in households that experienced food insecurity: United States, 2019–2020.https://www.cdc.gov/nchs/data/databriefs/db432.pdf

      ). Although there are no specific data related to job loss in parents of CYSHCN, the

      American Academy of Pediatrics. (2021). The impact of the pandemic on households with CYSHCN.https://www.aap.org/en/patient-care/family-snapshot-during-the-covid-19-pandemic/the-impact-of-the-pandemic-on-households-with-cyshcn/

      reported that more parents of CYSHCN (61%) had a change in employment (laid off, furloughed, decreased work hours) than parents without CYSHCN (46%). This is consistent with past studies that reported higher levels of unemployment and decreased work hours in parents of CYSHCN because of the needed coordination and necessary time for outpatient clinic and therapy appointments (
      • Liu S.
      • Lombardi J.
      • Fisher P.A.
      The COVID-19 pandemic impact on households of young children with special healthcare needs.
      Journal of Pediatric Psychology. 2022; 47: 158-170
      ).
      In addition to SDOH, family stress experienced during the pandemic increased the risk for ACEs (

      Heard, A. (2022). State efforts to address ACEs and trauma and build resilience. https://www.nga.org/news/commentary/state-efforts-to-address-aces-and-trauma-and-build-resilience/

      ;

      Health Resources and Services Administration, Maternal & Child Health Bureau (HRSA & MCHB). (2022). Children and youth with special health care needs. NSCH Data Brief. https://mchb.hrsa.gov/sites/default/files/mchb/programs-impact/nsch-data-brief-children-youth-special-health-care-needs.pdf

      ). For example, public health measures such as social distancing and restricted travel increased the risk of family violence (
      • Campbell A.M.
      An increasing risk of family violence during the Covid-19 pandemic: Strengthening community collaborations to save lives.
      Forensic Science International. 2020; 2100089
      ). Those children living in a household with domestic violence have 60 times the risk for neglect or abuse than the general U.S. child population. In particular, the pandemic increased child abuse risk factors such as decreased social support, unemployment, and limited resources (
      • Campbell A.M.
      An increasing risk of family violence during the Covid-19 pandemic: Strengthening community collaborations to save lives.
      Forensic Science International. 2020; 2100089
      ).
      An American Academy of Pediatrics Survey of 9,000 parents of CYSHCN during COVID indicated that while the physical and emotional interpersonal violence increased during the pandemic, it was higher in families of CYSHCN (30% vs. 17%). Furthermore, although about half of parents reported being stressed most of the time, 60% of families reported that they grew closer (

      American Academy of Pediatrics. (2021). The impact of the pandemic on households with CYSHCN.https://www.aap.org/en/patient-care/family-snapshot-during-the-covid-19-pandemic/the-impact-of-the-pandemic-on-households-with-cyshcn/

      ). An additional ACE experienced by CYSHCN was the loss of a parent or caregiver because of a COVID-19 infection or complication.
      • Ahmann E.
      Children's loss of parents and caregivers to COVID-19: “A hidden pandemic.
      Pediatric Nursing. 2021; 47: 309-311
      found that one in four COVID deaths is a loss of a caregiver for a child, with higher rates in racial/ethnic minority groups.

      Community Systems

      All the models and frameworks described in the background section of this manuscript include the community as an important factor in ensuring health and well-being for CYSHCN. Neighborhood safety, transportation, food and nutrition services, and social services are among the many community systems that support CYSHCN and their families. We focus on two community services—recreation and child care—to illustrate how COVID affects community systems that CYSHCN rely on.

      Recreation

      Neighborhood context is an important supporting component for CYSHCN (
      • Abdi F.M.
      • Seok D.
      • Murphey D.
      Children with special health care needs face challenges accessing information, support, and services.
      Child Trends. 2020;
      https://www.childtrends.org/publications/children-with-special-health-care-needs-face-challenges-accessing-information-support-and-services
      ;
      • Coleman C.L.
      • Morrison M.
      • Perkins S.K.
      • Brosco J.P.
      • Schor E.L.
      Quality of life and well-being for children and youth with special health care needs and their families: A vision for the future.
      Pediatrics. 2022; 149: S1-S8
      ). In particular, access to parks, recreation centers, sidewalks, and libraries promotes the health and well-being of CYSHCN. Access to fresh air and outdoor green space is important for child development and promotes mental well-being for all children. A systematic review of 300 studies revealed that green space improved children's physical activity, which concomitantly improved emotional well-being (
      • Fyfe-Johnson A.L.
      • Hazlehurst M.F.
      • Perrins S.P.
      • Bratman G.N.
      • Thomas R.
      • Garrett K.A.
      • Hafferty K.R.
      • Cullaz T.M.
      • Marcuse E.K.
      • Tandon P.S.
      Nature and children's health: A systematic review.
      Pediatrics. 2021; 148e2020049155
      ). Socialization with friends and participation in accessible activities at playgrounds and recreation centers are protective factors that support the flourishing of CYSHCN.
      At the beginning of COVID-19, all parks, gyms, and recreational facilities were closed. This reduced access to an important resource for building resilience in children, especially CYSHCN and others at risk for ACEs. Acknowledging the traumatic effects of the COVID-19 pandemic on many young children, the National Governors Association mounted multiple initiatives to prevent and address trauma and build resilience in children (

      Heard, A. (2022). State efforts to address ACEs and trauma and build resilience. https://www.nga.org/news/commentary/state-efforts-to-address-aces-and-trauma-and-build-resilience/

      ).

      Child Care

      Good quality child care offers developmental, educational, and health benefits to children from infancy to 13 years old. Child care also enables parents to work and/or pursue education. It is provided in different settings, such as child care centers, family child care homes, public schools, faith-based organizations, or a child's home.
      The main source of federal child care funding is the Child Care and Development Block Grant. In FY2022, it was funded at $6.165 billion, covering an average of 1.5 million children per month

      Administration for Children and Families, Office of Child Care. (2022). FY 2020 Preliminary Data Table 1 - Average Monthly Adjusted Number of Families and Children Served. https://www.acf.hhs.gov/occ/data/fy-2020-preliminary-data-table-1

      ), which is far below the estimated number of eligible children based on family income (

      Chien, N. (2019). Factsheet: Estimates of child care eligibility & receipt for fiscal year 2015.https://aspe.hhs.gov/sites/default/files/private/pdf/260361/CY2015ChildCareSubsidyEligibility.pdf

      ). Other federal early learning programs include the IDEA infant and toddler (Part C) and preschool programs (Part B;

      Guarino, A. (2022). Funding for key early learning programs.https://www.ffyf.org/funding-for-key-early-learning-programs/

      ).
      During the pandemic, the federal government provided COVID-19 relief funding to child care providers to cover the costs of maintaining and resuming child care. This included costs of cleaning, sanitation, paying personnel, and other necessary activities, even if providers were not previously receiving Child Care and Development Block Grant assistance (

      First Five Years Fund. (2021). At-A-Glance: Child Care and Development Block Grant (CCDBG) COVID-19 relief funding.https://www.ffyf.org/wp-content/uploads/2021/04/COVID-CCR-At-a-glance_4.7.21.pdf

      ). However, even with this funding, COVID-19 revealed the enduring gaps in the availability of good quality and affordable child care, including child care for CYSHCN.
      Many child care providers accept CYSHCN (e.g., children with asthma, allergies, or diabetes) and obtain medical guidance on how to meet their needs. However, some care providers hesitate to accept children with physical, emotional, sensory, cognitive, or other disabilities or those with complex health care needs. Furthermore, some parents are often reluctant to trust strangers with the special health care needs of their children.
      With the pandemic, many child care facilities shut their doors, especially given the health and safety concerns of COVID-19 and the importance of keeping children, parents, and childcare staff safe. This added to the disruption many families with CYSHCN faced during the pandemic. They were often on their own to arrange care even if they were infected with COVID-19 or had to care for other ill family members. There were not many viable alternatives. On a positive note, the pandemic broadened the constituencies and organizations to advocate for increases in federal and state funding and to call attention to the nation's child care crisis, especially its high costs to families (
      • Fillon J.
      Child Care Employment 12.4% Below Pre-Pandemic Levels. First Five Years Fund, 2022
      https://www.ffyf.org/child-care-employment-12-4-below-pre-pandemic-levels/
      ). This has the potential to harness support for child care for all children, including those with special health care needs.

      DISCUSSION

      In this paper, we outlined the challenges to providing care across systems of health, education, family, and community for CYSHCN during the pandemic and its aftermath. We described conceptual frameworks of the systems that CYSHCN and their families rely on. Each system presents challenges because of public and private sector policies and the characteristics of the children served. We did not address the challenges of coordinating care across systems. That requires knowledge of complex systems theories, which is beyond the scope of this paper.
      COVID-19 disrupted care for CYSHCN across systems for health care, education, families, and communities. Through the turbulence, we noted longstanding gaps and fragmentation in services and care for CYSHCN, offering a window of opportunity to define the problems and advocate for change. We also captured innovations, especially in telehealth, for advancing care.

      Limitations

      Our scholarship has several limitations. First, evidence and policies for COVID-19 generally and specifically for CYSHCN were constantly changing. Our goal was to write a paper that would be meaningful now and in the future. However, we had a moving target as we encountered new issues and evidence. Moreover, we only had 2 years, and 2 unusual years, of evidence to base our writing on. Finally, despite the plethora of evidence on COVID-19, evidence about coordination of care within and across systems for CYSHCN and their families was lacking, especially from the perspective of CYSHCN and their families or professionals in each system.

      Recommendations for Practice, Leadership, Research, and Policy

      Based on our scholarship, we offer the following recommendations for nurses, advanced practice registered nurses, and other professionals working with CYSHCN and their families:
      • 1.
        Incorporate shared decision-making between CYSHCN and their families and all components of the health care systems to promote child and family well-being.
      • 2.
        Implement objective measurements of child and family well-being, quality of life (e.g., family stress, social connection/social support), and physical/mental health in CYSHCN and their families.
      • 3.
        Be knowledgeable about federal and state special education policies regarding the IDEA, IEPs, 504 plans, and the rights of children with disabilities to a free and appropriate public education.
      • 4.
        Advise parents about communication with education personnel regarding lapses in education progress or other concerns related to COVID-19 or other unexpected health issues.
      • 5.
        Establish relationships with individuals in other systems so that if there are future disruptions in care, trusted channels of communication and coordination are in place.
      • 6.
        Apply the complex care ecosystems model, WSCC model, Bronfenbrenner's ecologic systems theory, the American Academy of Pediatrics Consensus Statement on the Core Tenets of Chronic Condition Management in Schools, and HRSA's Blueprint for Change when working with CYSHCN and their families.
      • 7.
        Prioritize mental/behavioral health for CYSHCN; advocate for appropriate mental/behavioral resources in health, education, and community settings, including integration of mental/behavioral health for CYSHCN.
      • 8.
        Advocate for state and federal initiatives that have the potential to expand access to and coverage for child health services. This includes addressing disparities in access to broadband in remote areas and enhancing clinician and patient skills in use of telehealth.
      • 9.
        Conduct research on the health and social needs of CYSHCN and their families as they interact with diverse systems.
      • 10.
        Engage with stakeholders for community policies to raise the voice of nursing expertise in diverse settings that have the potential to improve child health outcomes.

      Conclusions

      Prepandemic, CYSHCN and their families faced challenges in managing and coordinating care across health care, education, family, and community systems. COVID-19 highlighted the importance of these systems and their fragility. Conceptualizing the characteristics of these systems and explaining how they were affected by COVID-19 can enhance the ability of child health clinicians to care for CYSHCN so that they grow and develop to the best of their potential.

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      Article info

      Publication history

      Published online: September 21, 2022

      Footnotes

      Conflicts of interest: None to report.

      Identification

      DOI: https://doi.org/10.1016/j.pedhc.2022.09.009

      Copyright

      Copyright © 2022 by the National Association of Pediatric Nurse Practitioners. Published by Elsevier Inc. All rights reserved.

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