Children with Special Health Care Needs with One or More Adverse Experiences

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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 special needs children, the impact of conditions on CSHCN and their families, health insurance coverage, 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 percent of children under 18 with major disabilities, as single-year and five-year estimates, by county, city, and school district. Five-year estimates are available by legislative district, as well. These data also are available by health insurance status.†

In addition, the number and percent of public school students enrolled in special education by county and school district are available, as are the number and percent by disability and by race/ethnicity at the county level.‡

Finally, 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.§
* 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 who also 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) geographies with at least 70,000 residents.

† 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 serious difficulties in one or more of the following areas: hearing, vision, cognitive ability, ambulatory ability, self-care, or independent living.

‡ 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 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 CCS site. 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
Demographics
Access to Services for Children with Special Needs
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
Low Birthweight and Preterm Births
Weight
Why This Topic Is Important
More than 1 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 the 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 only about 16% 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, in California 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.
The majority of children with identified disabilities that potentially interfere with their education receive special education services; the most common condition among children in special education is having a learning disability (3, 4). There are many types of learning disability, which can affect speaking, listening, reading, writing, thinking, and/or computing (4). For some students, though, these conditions go unrecognized and unaddressed (4). Those with learning disabilities tend to have lower rates of high school graduation, college completion, and employment as adults (4).

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: http://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: http://www.lpfch.org/publication/their-own-words-improving-care-experience-families-children-special-health-care-needs

3.  As cited on kidsdata.org, Special education enrollment, by disability. (2017). California Department of Education.

4.  Horowitz, S. H., et al. (2017). The state of learning disabilities: Understanding the 1 in 5. National Center for Learning Disabilities. Retrieved from: https://www.ncld.org/the-state-of-learning-disabilities-understanding-the-1-in-5
How Children Are Faring
An estimated 15% of California children under age 18 have special health care needs, according to a 2011-2012 survey; among counties with data, estimates range from 14% to 19%. In 2009-2010, more than half of CSHCN in California had two or more chronic conditions, and 16% had four or more. Commonly reported conditions among California children with special health care needs (CSHCN) included allergies, asthma, attention deficit and hyperactivity disorder, and developmental delay.

In 2015, about 3% of California children had major disabilities including serious impairments in vision, hearing, walking, cognition, or self-care. Among uninsured children, 1.9% had one or more major disabilities, compared to 3.1% of insured children. Across counties with data, estimates of children with major disabilities ranged from 1.8% to 9% in 2011-2015.

More than 730,000 public K-12 students in California—almost 12% of all students—received special education services in 2016. Together, students with learning disabilities and speech or language impairments comprised the majority of students in special education, accounting for more than 60% of enrollees. Statewide and in all counties with data, the share of special education students receiving services for autism has grown since 2002. In 2016, 13% of special education students in California were enrolled for autism, up from 2% in 2002. Over the same period, the proportion enrolled for learning disabilities decreased by 18 percentage points, from 57% to 39%.

In 2014, nearly 200,000 children and youth with chronic diseases and/or acute injuries were actively enrolled in the California Children's Services (CCS) program. Of these, more than 25,000 were infants under age 1. Overall, statewide enrollment in CCS has increased by more than 35% since 2009.
According to 2011-2012 estimates, 61% of CSHCN in California have had at least one adverse experience, including living with someone with a drug or alcohol problem, divorce of parents, or economic hardship. Furthermore, an estimated 63% of CSHCN are resilient, meaning they are usually or always calm and in control when facing a challenge.
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: http://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: http://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: http://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: http://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: http://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: http://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