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Why This Topic Is Important
Nearly 1.4 million California children, and more than 15 million children nationwide, have or are at increased risk for a chronic health condition—physical, developmental, mental, or behavioral—and require care and related services of a type or amount beyond that required by children generally (1). As advances in technology and medicine continue to improve and extend the lives of children with special health care needs (CSHCN), these numbers are expected to grow (2). Over the next decade, for instance, it is estimated that the number of children with medically complex conditions will double (3).

When compared with children who do not have special health care needs, CSHCN are more likely to be limited in their ability to function and participate in daily activities, and to experience social, academic, and other life challenges that can complicate their medical care (2, 4, 5). As a result, CSHCN often rely on a range of services from multiple sectors, and their parents and family members often face higher caregiving burdens and experience more stress and difficulties with employment and finances when compared with other families (6).

 Obtaining timely, appropriate, and affordable care is a major problem for many CSHCN families (4, 5). Statewide and nationally, around 9 in 10 CSHCN do not receive care in a well-functioning system—one meeting federal standards for accessibility of services, adequacy of health insurance coverage, shared decision-making with families, and receipt of care within a medical home (7). Having a medical home itself requires—among other benchmarks for comprehensive, high-quality primary care—that children receive family-centered care and effective care coordination when needed (8).

Major barriers to care, especially in California, include a fragmented system of services and an inadequate, shrinking workforce of pediatric subspecialists (2, 3, 4, 5). Beyond service system barriers, social factors and practices—such as poverty and discrimination (e.g., on the basis of race/ethnicity or ability)—influence access to care, and, as a result, health outcomes. For example, CSHCN of color and those in low-income families are more likely to have unmet health needs and limited access to high-quality care when compared with their more affluent and white peers (9).
For more information, see kidsdata.org’s Research & Links section or visit Lucile Packard Foundation for Children's Health.

Sources for this narrative:

1.  Data Resource Center for Child and Adolescent Health. (n.d.). 2022 National Survey of Children's Health data query: Percent of children, ages 0 through 17, with special health care needs (CSHCN). Child and Adolescent Health Measurement Initiative & U.S. Department of Health and Human Services. Retrieved from: https://www.childhealthdata.org/browse/survey/results?q=10025&r=1&r2=6

2.  National Academies of Sciences, Engineering, and Medicine. (2023). The future pediatric subspecialty physician workforce: Meeting the needs of infants, children, and adolescents. National Academies Press. Retrieved from: https://nap.nationalacademies.org/catalog/27207/the-future-pediatric-subspecialty-physician-workforce-meeting-the-needs-of

3.  Kelly, E., & Layton, K. (2023). California's children need access to pediatric subspecialists. Children's Specialty Care Coalition. Retrieved from: https://lpfch.org/resource/californias-children-need-access-to-pediatric-subspecialists

4.  Kuo, D. Z., et al. (2022). Access to services for children and youth with special health care needs and their families: Concepts and considerations for an integrated systems redesign. Pediatrics, 149(Suppl. 7), e2021056150H. Retrieved from: https://publications.aap.org/pediatrics/article/149/Supplement%207/e2021056150H/188217/Access-to-Services-for-Children-and-Youth-With

5.  Brown, T. W., et al. (Eds.). (2022). Blueprint for Change: A national framework for a system of services for children and youth with special health care needs. Pediatrics, 149(Suppl. 7). Retrieved from: https://publications.aap.org/pediatrics/issue/149/Supplement%207

6.  Sellmaier, C. (2022). Physical and mental health of mothers and fathers caring for children with special health care needs: The influence of community resources. Journal of Family Issues, 43(11), 2815-2840. Retrieved from: https://journals.sagepub.com/doi/10.1177/0192513X211035580

7.  Data Resource Center for Child and Adolescent Health. (n.d.). 2022 National Survey of Children's Health data query: Percent of children with special health care needs (CSHCN), ages 0 through 17, who receive care in a well-functioning system. Child and Adolescent Health Measurement Initiative & U.S. Department of Health and Human Services. Retrieved from: https://www.childhealthdata.org/browse/survey/results?q=10026&r=1&r2=6

8.  National Resource Center for Patient/Family-Centered Medical Home. (2022). What is medical home? American Academy of Pediatrics. Retrieved from: https://www.aap.org/en/practice-management/medical-home/medical-home-overview/what-is-medical-home

9.  Houtrow, A., et al. (2022). Health equity for children and youth with special health care needs: A vision for the future. Pediatrics, 149(Suppl. 7), e2021056150F. Retrieved from: https://publications.aap.org/pediatrics/article/149/Supplement%207/e2021056150F/188222/Health-Equity-for-Children-and-Youth-With-Special
Policy Implications
Children with special health care needs (CSHCN), like all young people, need ready access to appropriate physical and mental health care, educational opportunities, and, sometimes, social services and other support (1). CSHCN, especially those with more complex conditions, frequently encounter obstacles to obtaining timely access to pediatric subspecialty providers and receiving comprehensive, coordinated, high-quality health care—one major obstacle being inadequate or inconsistent health insurance coverage (1, 2, 3). CSHCN also are more likely than children without special needs to experience psychosocial problems, difficulties with school, and other life challenges (1). Their families, too, often face significant caregiving burdens and economic, employment, and personal stress in excess of families without CSHCN (1, 4). While most CSHCN do not receive all aspects of quality health care, inequities in access to care and other resources are especially pronounced for children of color and low-income children (5).

Systems serving CSHCN can be strengthened through comprehensive, equity-focused programs and policies at the local, state, and national levels. Frameworks such as the national Blueprint for Change aim to improve service access and financing, reduce disparities, and enhance the lives of children and families (1, 5). Achieving equity in access to care and health outcomes for CSHCN requires addressing the root causes of disparities, such as poverty and discrimination, and overcoming cross-sector challenges involving resources and financing, system coordination, and workforce development and training (5).

Strategies to promote equitable access to care for CSHCN and their families should address:
  • Equity-focused systems change: Leaders recommend a paradigm shift towards systems that are simplified, centered on equity, proactive instead of reactive, and based on needs rather than diagnoses, eligibility thresholds, insurance authorization, or other factors. Removing administrative barriers, aligning eligibility processes, and supporting families in navigating services can streamline access to care and prioritize the needs of CSHCN and their families (1, 2, 6).
  • Comprehensive and consistent health care coverage: CSHCN need comprehensive insurance that provides adequate coverage for medical and mental health care, access to specialty care providers, care coordination and integration, and long-term supportive services (1, 2). These children also need consistent coverage, without gaps that can cause delays in needed care. Appropriate reimbursement, especially by Medicaid (Medi-Cal), is critical to ensuring that high-quality services are available from an adequate network of providers (2, 5, 7).
  • Early and frequent screening: Regular screenings for special health care needs beginning early in a child's life have the potential to reduce long-term consequences of some chronic conditions, highlighting the urgency for equitable access to early identification and intervention services (8).
  • Family-centered care: CSHCN tend to have better health outcomes when they receive family-centered care—from providers who engage with families, include them as partners in decision-making, and prioritize their needs, values, and goals (1, 9). Concerted efforts are needed to address family-centered care disparities for CSHCN, particularly by family socioeconomic status (1, 9).
  • High quality, well coordinated, integrated services: CSHCN benefit from evidence-based health care services provided in the context of a medical home, which assures high quality, well-coordinated care, including integrated physical, oral, mental, and behavioral health care and collaboration across community, school, and home-based support services (2, 6). Delivery of this type of care is uneven, and often is connected to insurance reimbursement policies (5).
  • Place-based care: Telehealth and other innovative methods of care—such as co-management (in which subspecialists and other providers actively coordinate)—can increase access to services for CSHCN families facing geographic or other barriers (2, 5, 6).
  • Educational inclusion: Some groups of students with disabilities—including CSHCN of color—are disproportionately represented in special education and in learning settings segregated from their peers without disabilities (10). Providing all CSHCN with access to high-quality support services at school and ensuring their full inclusion with other children in general education settings is critical to their development and can maximize their social and academic outcomes (10).
  • Adequate subspecialty workforce: CSHCN with complex conditions need access to pediatric subspecialty providers who are able to focus on specific health care needs. The shortage of pediatric subspecialists warrants revamped recruitment and retention efforts, along with increased collaboration between specialty and primary care providers (2, 7).
  • Cultural responsiveness: A health care workforce that reflects the cultural and linguistic diversity of CSHCN could help reduce disparities and improve health outcomes (1, 2). All sectors serving CSHCN, including medical subspecialties, should have a diverse workforce trained on culturally responsive practices (5).
  • Continuity across service sectors: CSHCN often must move across service sectors, such as from the pediatric to adult health care system as they age. Continuity and support across systems and sectors should be prioritized, along with minimizing new hurdles to accessing services (5).
  • Robust investments in financing reform: A complicated web of service systems with dueling eligibility criteria and confusing payment policies can result in delayed or denied services for CSHCN and financial hardship for families (1). Current financing systems disincentivize equity, promote fragmentation, and impede reform (5, 6). Public investments are needed to transform financing models in ways that support integrated, comprehensive care, minimize hardship for families, and address structural discrimination (1, 5). This includes adequate state and federal funding for public systems serving CSHCN (2, 7).
For more information, see kidsdata.org’s Research & Links section or visit Lucile Packard Foundation for Children's Health.

Sources for this narrative:

1.  McLellan, S. E., et al. (2022). A Blueprint for Change: Guiding principles for a system of services for children and youth with special health care needs and their families. Pediatrics, 149(Suppl. 7), e2021056150C. Retrieved from: https://publications.aap.org/pediatrics/article/149/Supplement%207/e2021056150C/188225/A-Blueprint-for-Change-Guiding-Principles-for-a

2.  National Academies of Sciences, Engineering, and Medicine. (2023). The future pediatric subspecialty physician workforce: Meeting the needs of infants, children, and adolescents. National Academies Press. Retrieved from: https://nap.nationalacademies.org/catalog/27207/the-future-pediatric-subspecialty-physician-workforce-meeting-the-needs-of

3.  Schiff, J., et al. (2022). Financing care for CYSHCN in the next decade: Reducing burden, advancing equity, and transforming systems. Pediatrics, 149(Suppl. 7), e2021056150I. Retrieved from: https://publications.aap.org/pediatrics/article/149/Supplement%207/e2021056150I/188221/Financing-Care-for-CYSHCN-in-the-Next-Decade

4.  Sellmaier, C. (2022). Physical and mental health of mothers and fathers caring for children with special health care needs: The influence of community resources. Journal of Family Issues, 43(11), 2815-2840. Retrieved from: https://journals.sagepub.com/doi/10.1177/0192513X211035580

5.  Houtrow, A., et al. (2022). Health equity for children and youth with special health care needs: A vision for the future. Pediatrics, 149(Suppl. 7), e2021056150F. Retrieved from: https://publications.aap.org/pediatrics/article/149/Supplement%207/e2021056150F/188222/Health-Equity-for-Children-and-Youth-With-Special

6.  Kuo, D. Z., et al. (2022). Access to services for children and youth with special health care needs and their families: Concepts and considerations for an integrated systems redesign. Pediatrics, 149(Suppl. 7), e2021056150H. Retrieved from: https://publications.aap.org/pediatrics/article/149/Supplement%207/e2021056150H/188217/Access-to-Services-for-Children-and-Youth-With

7.  Kelly, E., & Layton, K. (2023). California's children need access to pediatric subspecialists. Children's Specialty Care Coalition. Retrieved from: https://lpfch.org/resource/californias-children-need-access-to-pediatric-subspecialists

8.  Meurer, J., et al. (2022). Improving child development screening: Implications for professional practice and patient equity. Journal of Primary Care and Community Health, 13. Retrieved from: https://journals.sagepub.com/doi/full/10.1177/21501319211062676

9.  Morgan, P. L., et al. (2022). Disparities in family-centered care among U.S. children and youth with special healthcare needs. Journal of Pediatrics, 253, 297-303.e6. Retrieved from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10635424

10.  National Academies of Sciences, Engineering, and Medicine. (2023). Closing the opportunity gap for young children. National Academies Press. Retrieved from: https://nap.nationalacademies.org/catalog/26743/closing-the-opportunity-gap-for-young-children
How Children Are Faring
In 2022, fewer than 1 in 13 California children with special health care needs (CSHCN) received care in a well-functioning health system—one meeting federal minimum standards for children's insurance coverage, preventive care, access to needed services, receipt of care within a medical home, transition to adult health care, and family engagement with providers in health decisions. Among California children without special health care needs, the share receiving care in a well-functioning system was twice as high as for CSHCN, but still lower than 1 in 6.

Although a vast majority of California CSHCN (96%) in 2022 had consistent health insurance coverage over the previous year, only 59% had adequate coverage at the time of survey—meaning their current benefits met their needs, allowed them to see needed providers, and had reasonable or no out-of-packet costs. By comparison, 71% of non-CSHCN statewide had adequate health insurance.

According to 2022 estimates, 31% CSHCN in California, and 38% nationwide, received health care meeting American Academy of Pediatrics standards for a medical home—accessible, continuous, coordinated, compassionate, comprehensive, culturally effective, family-centered primary care.

Access to a medical home varies by demographic and socioeconomic factors. CSHCN in households with incomes below their federal poverty threshold ($27,479 for a family of two adults and two children in 2022) are generally less likely to have a medical home than their peers living at or above 400% of their poverty threshold—16% vs. 40%, according to the latest California estimates. Nationwide, fewer than a third of African American/black and Hispanic/Latino CSHCN received care in a medical home in 2022, compared with almost half (44%) of white CSHCN.