Children with Special Health Care Needs, by Gender (California & U.S. Only)

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Learn More About Characteristics of Children with Special Needs

Measures of Characteristics of Children with Special Needs on Kidsdata.org
On kidsdata.org, indicators related to children with special health care needs (CSHCN) include data on demographics and other characteristics of CSHCN, the impact of special health care needs on children and their families, health insurance coverage for CSHCN, and access to and quality of health care and other services.* See kidsdata.org's CSHCN category for a full list of indicators.
In this topic on characteristics of children with special needs, kidsdata.org also provides:
* These measures come from the National Survey of Children's Health and National Survey of Children with Special Health Care Needs, in which data are collected from interviews with parents. In these surveys, CSHCN are defined as children who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and require health and related services of a type or amount beyond that required by children generally. Depending on the indicator, estimates are available for California, the U.S., all states other than California (including the District of Columbia), and/or (as local area estimates) counties and county groups.

† Special education gives students with specific disabilities access to public education. Special education programs provide early intervention services for disabled children from birth to age 3, early childhood education from ages 3-5, and instruction in the least restrictive environment up to age 22. According to the California Department of Education, children and youth ages 5-18 account for about 90% of the population enrolled in special education; children ages 0-4 and young adults ages 19-22 account for about 10%.

‡ These data come from the U.S. Census Bureau's American Community Survey, in which children are classified as having major disabilities if they have one or more serious difficulties in hearing, vision, cognitive ability, ambulatory ability, self-care, or independent living.

§ These data are analyzed by the Stanford Center for Policy, Outcomes and Prevention. The CCS program helps ensure access to essential health care services for California children ages 0-21 with serious diseases. It is a joint state/county program that provides medical case management and health care service authorization to eligible children. For more information and eligibility criteria, visit the California Dept. of Health Care Services. CCS eligibility extends to children with chronic diseases as well as to those with acute injuries; therefore many, but not all, CCS enrollees can be considered CSHCN.
Characteristics of Children with Special Needs
Asthma
Bullying and Harassment at School
Student Demographics
Access to Services for Children with Special Needs
Children's Emotional Health
Cancer
Health Insurance Coverage for Children with Special Health Care Needs
Childhood Adversity and Resilience
Impacts of Special Health Care Needs on Children and Families
Quality of Care for Children with Special Health Care Needs
Dental Care
School Attendance and Discipline
Health Care
Health Status
Injuries
Low Birthweight and Preterm Births
Weight
Why This Topic Is Important
More than 1.25 million California children and youth, and nearly 14 million 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). Their ongoing health problems—physical, behavioral, or developmental—can affect their ability to function and participate in important educational and social activities, and, in some cases, can shorten their lives (2, 3). Although advances in medical care have extended and improved the lives of millions of children, obtaining timely, appropriate, and affordable care remains a problem for many families (2, 3). The vast majority of children with special health care needs (CSHCN) nationally (86%) do not receive care that meets federal standards for a well-functioning system (4). Further, racial/ethnic and socioeconomic inequities in access to care and other supports can lead to poorer outcomes for vulnerable CSHCN and their families (2, 3).

When compared with children who do not have special health care needs, CSHCN are more likely to experience social-emotional problems, academic challenges, and other types of adversity which can complicate their medical care (2, 3). 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 (2, 3).
The demographic data provided here can be useful for projecting needs 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 and Lucile Packard Foundation for Children's Health's program for children with special health care needs.

Sources for this narrative:

1.  Data Resource Center for Child and Adolescent Health. (2020). 2018-2019 National Survey of Children’s Health data query: Percent of children with special health care needs (CSHCN), ages 0 through 17. Child and Adolescent Health Measurement Initiative & U.S. Department of Health and Human Services. Retrieved from: https://www.childhealthdata.org/browse/survey/results?q=7713&r=6&r2=1

2.  Abdi, F. M., et al. (2020). Children with special health care needs face challenges accessing information, support, and services. Child Trends. Retrieved from: https://www.childtrends.org/publications/children-with-special-health-care-needs-face-challenges-accessing-information-support-and-services

3.  Mattson, G., et al. (2019). Psychosocial factors in children and youth with special health care needs and their families. Pediatrics, 143(1), e20183171. Retrieved from: https://pediatrics.aappublications.org/content/143/1/e20183171

4.  Data Resource Center for Child and Adolescent Health. (2020). 2018-2019 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=7714&r=6&r2=1
How Children Are Faring
In 2016-2019, an estimated 19% of U.S. children and 14% 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 percentage of children with special health care needs (CSHCN) ranged from less than 13% to more than 18%. An estimated 69% of CSHCN statewide had more than one chronic condition, and 31% had more than three. Children with more complex health care needs (i.e., those whose conditions are not managed primarily through prescription medication and who require additional care, services, or therapies) made up almost three-quarters (72%) of California CSHCN in 2016-2019.

More than one in eight California public school students ages 0-22 received special education services for a disability in 2019. 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 2019, from 10.6 students per 1,000 to 19.4 per 1,000, mirroring national trends. At the local level, rates of autism ranged from fewer than 8 students per 1,000 to more than 28 per 1,000 across counties with data in 2019.

Children with major disabilities represent 3.3% of California's child population, according to 2018 estimates. This amounts to more than 300,000 children ages 0-17 with one or more or more serious impairments in hearing, vision, cognition, walking, or self-care. Across counties and county groups, the percentage of children with major disabilities ranged from 1.9% to 7.3% in 2018. Statewide, an estimated 3.5% of children with health insurance coverage ages 0-18 had major disabilities, compared with 2.6% of uninsured children.

In 2017-2018, an estimated 42% 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 one-third (33%) to more than one-half (55%).
Policy Implications
Children with special health care needs (CSHCN), like all young people, need ready access to appropriate medical care, educational opportunities, and, sometimes, mental health care, social services, and other support. CSHCN, especially those with more complex conditions, may face challenges in obtaining timely access to pediatric subspecialty providers and in 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, 2). Their families, too, often experience significant caregiving burdens and economic, employment, and personal stress in excess of families without CSHCN (1, 2). 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 (1, 2).

Policies and programs to promote the health and well being of CSHCN and their families should address:
  • Comprehensive and consistent health care coverage: CSHCN need comprehensive health insurance that provides adequate medical and mental health coverage, including access to specialty care providers. These children also need consistent coverage, without gaps that can cause delays or problems receiving critical services. Appropriate reimbursement is critical to maintaining an adequate provider network, as well (1, 3, 4).
  • High-quality, well-coordinated, and consistent services: CSHCN benefit from evidence-based health care services provided in the context of a medical home that assures high-quality, well-coordinated care, including effective use of electronic health information and collaboration across health, community, school, and home-based support services (1, 2, 5).
  • Family-centered care: Families are the most central and enduring influence in children's lives, and CSHCN depend on their families to carry out agreed-upon management plans. Families' values, beliefs, goals, and priorities should help guide care plans, and families should be included as partners in all health care decision-making (1, 2).
  • Early and continuous screening: Systematic 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. Such screenings help identify problems early and can provide an opportunity to assess the needs and strengths of families, as part of providing tailored and family-centered care (2, 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 (6).
  • Support for adulthood transition: As CSHCN age, they need support from their health care, educational, and social service systems to successfully transition to adulthood. For example, they may need assistance to move from school to work or post-secondary education, from pediatric care to adult health care, and/or from family dependency to self-sufficiency (5, 6).
  • Financing of care: Families of CSHCN must navigate a complicated web of service systems with dueling eligibility criteria and confusing payment policies. This can result in delayed or denied services for children and financial hardship for families. State policy must work toward a unified, efficient, and comprehensive payment system for health care and developmental services, as well as ensuring adequate funding for public systems serving CSHCN (3, 7).
For more information, see kidsdata.org’s Research & Links section and Lucile Packard Foundation for Children's Health's program for children with special health care needs.

Sources for this narrative:

1.  Abdi, F. M., et al. (2020). Children with special health care needs face challenges accessing information, support, and services. Child Trends. Retrieved from: https://www.childtrends.org/publications/children-with-special-health-care-needs-face-challenges-accessing-information-support-and-services

2.  Mattson, G., et al. (2019). Psychosocial factors in children and youth with special health care needs and their families. Pediatrics, 143(1), e20183171. Retrieved from: https://pediatrics.aappublications.org/content/143/1/e20183171

3.  Comeau, M., et al. (2019). Fundamentals of financing the system of care for children and youth with special health care needs (CYSHCN). Catalyst Center. Retrieved from: https://ciswh.org/resources/critical-elements-for-financing-the-system-of-care-for-cyshcn-an-infographic-series/

4.  Pordes, E., et al. (2018). Models of care delivery for children with medical complexity. Pediatrics, 141(Suppl. 3), S212-S223. Retrieved from: https://pediatrics.aappublications.org/content/141/Supplement_3/S212

5.  Association of Maternal and Child Health Programs, et al. (2017). Standards for systems of care for children and youth with special health care needs: Version 2.0. Lucile Packard Foundation for Children's Health. Retrieved from: https://www.lpfch.org/publication/standards-systems-care-children-and-youth-special-health-care-needs-version-20

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

7.  Langer, C. S., et al. (2018). Evolving federal and state health care policy: Toward a more integrated and comprehensive care-delivery system for children with medical complexity. Pediatrics, 141(Suppl. 3), S259-S265. Retrieved from: https://pediatrics.aappublications.org/content/141/Supplement_3/S259
Websites with Related Information
Key Reports and Research
County/Regional Reports
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