Active California Children's Services (CCS) Enrollees, by Age Group

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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 the number and percentage of children with major disabilities, as single-year and five-year estimates, by county, city, school district, and/or legislative district. These data also are available by health insurance coverage status.

In addition, kidsdata.org offers the number of active enrollees in the California Children's Services (CCS) program (i.e., enrollees with paid claims), by age group and county.

Finally, estimates of children who have been administered a standardized development and behavioral screening tool, as based on parent reports, are available for the state and counties.
* These data come from the National Survey of Children with Special Health Care Needs and the National Survey of Children's Health, which are conducted through telephone 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.

† 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
Insurance Coverage for Children with Special Health Care Needs
Childhood Adversity and Resilience
Impact of Special Health Care Needs on Children & Families
Quality of Care for Children with Special Health Care Needs
School Attendance and Discipline
Health Care
Health Status
Injuries
Low Birthweight and Preterm Births
Weight
Why This Topic Is Important
More than one million California children and youth have a need for health care services of a type or amount beyond that required by children generally. Their ongoing health problems—physical, behavioral, or developmental—can affect their ability to function and participate in important educational and social activities. In some cases their health problems can shorten their lives (1). Medical care for children with special health care needs (CSHCN) is often complicated by the co-occurrence of social, emotional, and academic problems (1, 2). Because of their higher caregiving burdens, families of CSHCN tend to experience more stress and difficulties with employment and finances than other families (1, 2).

CSHCN account for more than 40% of all health care costs among children nationwide, despite making up less than 20% of the U.S. child population (1). Though 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. More than four in five CSHCN do not receive one or more basic aspects of quality health care, statewide and nationally (1). The demographic data provided here can be useful for projecting needs and developing policies to ensure that all CSHCN reach their maximum health potential.
For more information, see kidsdata.org’s Research & Links section and LPFCH's program for children with special health care needs.

Sources for this narrative:

1.  Child and Adolescent Health Measurement Initiative. (2013). Children with special health care needs in California: A profile of key issues. Lucile Packard Foundation for Children's Health. Retrieved from: https://www.lpfch.org/publication/children-special-health-care-needs-california-profile-key-issues

2.  Hughes, D. (2015). In their own words: Improving the care experience of families with children with special health care needs. Lucile Packard Foundation for Children's Health & University of California San Francisco. Retrieved from: https://www.lpfch.org/publication/their-own-words-improving-care-experience-families-children-special-health-care-needs
How Children Are Faring
In 2016-2018, an estimated 19% of U.S. children and 15% 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 12% to more than 18%. An estimated 67% CSHCN statewide had more than one chronic condition, and 32% 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 nearly three-quarters (74%) of California CSHCN in 2016-2018.

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 2015-2016, an estimated 42% of children ages 1-11 statewide had received a standardized developmental screening. At the county level, figures varied widely, from less than 30% (San Joaquin, San Benito, Yuba, San Mateo) to more than 60% (Stanislaus, Marin) across regions with data.
Nearly 200,000 children and youth with chronic diseases and/or acute injuries were actively enrolled in the California Children's Services (CCS) program in 2014. Of these, more than 25,000 were infants under age 1. Overall, statewide enrollment in CCS increased by more than 35% between 2009 and 2014.
Policy Implications
Children and youth with special health care needs (CYSHCN), like all young people, need ready access to appropriate medical care, educational opportunities, and, sometimes, social services. CYSHCN, especially those with more complex conditions, may face challenges in obtaining timely access to pediatric subspecialty care and receiving comprehensive, coordinated, high-quality health care (1, 2). They also may experience difficulties participating in school and recreational activities (1, 3). Their families, too, often have to manage economic, social, and personal burdens in excess of families without CYSHCN (1, 3).

Policies and programs to promote the health and well being of CYSHCN and their families should address:
  • Comprehensive and consistent health care coverage: CYSHCN need comprehensive health insurance that provides adequate medical and mental health coverage, including access to specialty care providers (1, 4, 5). 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 (4, 5).
  • High-quality, well-coordinated, and consistent services: CYSHCN benefit from evidence-based health care services provided in the context of a medical home that assures high quality, well-coordinated care (1, 2, 4).
  • Family-centered care: Families are the most central and enduring influence in children's lives, and most of children's care depends on their families carrying 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, 3, 4).
  • 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 (3, 4).
  • Inclusion: Providing CYSHCN 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 CYSHCN 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 (1, 4).
  • Financing of care: Families of CYSHCN 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 CYSHCN (1, 2, 4, 7).
For more information, see kidsdata.org’s Research & Links section and LPFCH's program for children with special health care needs.

Sources for this narrative:

1.  Child and Adolescent Health Measurement Initiative. (2013). Children with special health care needs in California: A profile of key issues. Lucile Packard Foundation for Children's Health. Retrieved from: https://www.lpfch.org/publication/children-special-health-care-needs-california-profile-key-issues

2.  Bachman, S. S., et al. (2015). The care coordination conundrum and children and youth with special health care needs. Catalyst Center & Lucile Packard Foundation for Children's Health. Retrieved from: https://www.lpfch.org/publication/care-coordination-conundrum

3.  U.S. Department of Health and Human Services, Health Resources and Services Administration. (2013). The National Survey of Children with Special Health Care Needs Chartbook 2009-2010. Retrieved from: https://mchb.hrsa.gov/cshcn0910

4.  Association of Maternal and Child Health Programs. (2014). Developing structure and process standards for systems of care serving children and youth with special health care needs. Lucile Packard Foundation for Children's Health. Retrieved from: https://www.lpfch.org/publication/standards-systems-care-children-and-youth-special-health-care-needs

5.  Gans, D., et al. (2013). Assuring children's access to pediatric subspecialty care in California. UCLA Center for Health Policy Research & Lucile Packard Foundation for Children's Health. Retrieved from: https://www.lpfch.org/publication/assuring-children's-access-pediatric-subspecialty-care-california

6.  American Occupational Therapy Association. (2015). Occupational therapy's role in mental health promotion, prevention, and intervention with children and youth: Inclusion of children with disabilities. Retrieved from: https://www.aota.org/~/media/Corporate/Files/Practice/Children/Inclusion-of-Children-With-Disabilities-20150128.PDF

7.  Schumacher, K. (2015). Children's health programs in California: Promoting a lifetime of health and well-being. California Budget and Policy Center & Lucile Packard Foundation for Children's Health. Retrieved from: https://calbudgetcenter.org/resources/childrens-health-programs-in-california-promoting-a-lifetime-of-health-and-well-being
Websites with Related Information
Key Reports and Research
County/Regional Reports
More Data Sources For Characteristics of Children with Special Needs