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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 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 ongoing physical, developmental, behavioral, or mental health problems, CSHCN are more likely to be limited in their ability to function and participate in daily activities (2, 4). They also are more likely to experience social problems, academic challenges, and other types of adversity that can complicate their medical care (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). 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 (7). They also are less likely to access other important resources such as quality education and stable housing (7).
The data provided here on characteristics of CSHCN can be useful for projecting needs, targeting social determinants of health, and developing program and policy solutions to ensure that all CSHCN reach their maximum health potential.

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.  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 (1, 2). They 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, 3). 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 (4). Home and community environments, family structure, and insurance coverage also have been linked to disparities in obtaining care (2, 5, 6).

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, workforce development and training, and political will (4).

Policy, system, and practice options to promote the health and well being of CSHCN and their families should address:
  • Equity-focused systems change: 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, 4). In California, continued efforts are needed to improve equity and access across state systems serving CSHCN, including the regional center system and the California Children's Services (CCS) program (7, 8).
  • 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, 4, 9).
  • 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 (10).
  • 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, 6). Concerted efforts are needed to address family-centered care disparities for CSHCN, particularly by family socioeconomic status (1, 6).
  • 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, 5). Delivery of this type of care is uneven, and often is connected to insurance reimbursement policies (4).
  • 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, 4, 5).
  • Inclusion: Providing CSHCN with opportunities for inclusion with other children in academic, social, and recreational settings is critical to their development and can maximize achievement and quality of life (11).
  • Culturally responsive workforce: 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 (4, 12).
  • 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 (4).
  • 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 (4, 5). Public investments are needed to transform financing models in ways that support integrated, comprehensive care, minimize hardship for families, and address structural discrimination (1, 4). This includes adequate state and federal funding for public systems serving CSHCN (2, 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.  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.  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

4.  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

5.  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

6.  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

7.  Public Counsel. (2022). Examining racial and ethnic inequities among children served under California’s developmental services system: Where things currently stand. Retrieved from: https://lpfch.org/resource/examining-racial-and-ethnic-inequities-among-children-served-under-californias-developmental-services-system-where-things-currently-stand

8.  Rienks, J. (2023). California Children’s Services needs assessment: Looking back to move forward. UC San Francisco Family Health Outcomes Project. Retrieved from: https://lpfch.org/resource/california-childrens-services-needs-assessment-looking-back-to-move-forward

9.  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

10.  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

11.  National Academies of Sciences, Engineering, and Medicine. (2018). Opportunities for improving programs and services for children with disabilities. National Academies Press. Retrieved from: https://www.nap.edu/catalog/25028/opportunities-for-improving-programs-and-services-for-children-with-disabilities

12.  National Center for Learning Disabilities. (2023). Significant disproportionality in special education: Current trends and actions for impact. Retrieved from: https://www.ncld.org/?resources=in-vitae-turpis-massa
How Children Are Faring
In 2022, an estimated 21% of U.S. children and 16% of California children ages 0-17 had special health care needs—meaning they had or were at increased risk for a chronic physical, developmental, behavioral, or emotional condition and required health and related services of a type or amount beyond that required by children generally. Across California counties and county groups, the share of children with special health care needs (CSHCN) ranged from 10% to 20%. An estimated 65% of CSHCN statewide had more than one chronic condition, and 27% had more than three. Children with more complex health care needs (those whose conditions are not managed primarily through prescription medication and who require additional care, services, or therapies) made up more than three-quarters (77%) of the state's CSHCN.

California CSHCN had higher rates of health insurance coverage than their peers without special health care needs in 2022. They also had higher rates of overweight or obesity, behavioral or mental health conditions, and adverse childhood experiences, and lower rates of resilience (usually or always staying calm and in control when faced with a challenge).

Nearly 40% of California CSHCN lived on household income lower than 200% of the poverty threshold ($59,356 annually for a family of two adults and two children). Among families of Hispanic/Latino CSHCN, the share was more than 50%, compared with fewer than 20% for families of white CSHCN.

Children with major disabilities represent 3.8% of California's child population, according to 2021 estimates. This amounts to more than 330,000 children ages 0-17 with one or more or more serious impairments in hearing, vision, cognition, walking, or self-care. Across counties with data, the percentage of children with major disabilities ranged from less than 2% to more than 7% in 2016-2020.

More than one in eight California public school students ages 0-22 received special education services for a disability in 2020. Statewide and nationally, learning disabilities, speech/language impairments, and autism are the most prevalent primary disabilities in the student body. The rate of autism among California students nearly doubled between 2011 and 2020, from 10.6 students per 1,000 to 20.3 per 1,000, mirroring national trends. At the local level, rates of autism ranged from fewer than 10 students per 1,000 to more than 25 per 1,000 across counties with data in 2020.

In 2021-2022, an estimated 48% of children ages 1-11 statewide had received a standardized developmental screening. Across counties with data, the share of children receiving developmental screenings ranged from less than 30% to more than 70%.