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- Definition: Estimated percentage of children with special health care needs ages 0-17 who have experienced one or more adverse experiences as of their current age (e.g., in 2011-2012, an estimated 60.9% of California children with special health care needs had experienced one or more adverse experiences).
- Data Source: Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health, Advancing data-in-action partnerships for children and children with special health care needs in California counties and cities using synthetic estimation from the 2011/12 National Survey of Children’s Health and 2008-2012 American Community Survey (Jun. 2016).
- Footnote: Children with special health care needs are defined as those 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. The National Survey of Children’s Health included nine adverse childhood experiences deemed suitable for parent response: (1) socioeconomic hardship, (2) divorce/separation of parent, (3) death of parent, (4) parent served time in jail, (5) witness to domestic violence, (6) victim of neighborhood violence, (7) lived with someone who was mentally ill or suicidal, (8) lived with someone with alcohol/drug problem, (9) treated or judged unfairly due to race/ethnicity. These data are based on methods of local area synthetic estimation; for more information, please refer to: Advancing Improvements in MCH Outcomes Using Local Area Estimates from the National Survey of Children's Health: An Overview of Methods and Field Applications (Sep. 2016). Some regions listed are Census Designated Places (CDPs), such as East Los Angeles; CDPs are communities within the unincorporated part of a county.
Learn More About Characteristics of Children with Special Needs
- Measures of Characteristics of Children with Special Needs on Kidsdata.org
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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 percentage 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 percentage of public school students enrolled in special education by county and school district are available, as are the number and percentage by primary 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
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- Active California Children's Services (CCS) Enrollees, by Age Group
- Children with Special Health Care Needs (California & U.S. Only)
- Prevalence of Special Health Care Needs Among Children (Regions of 70,000 Residents or More)
- Children with Four or More Functional Difficulties, by Type of Insurance (California & U.S. Only)
- Children with Major Disabilities, by City, School District and County (Regions of 65,000 Residents or More)
- Children Who Are Overweight or Obese, by Special Needs Status (California & U.S. Only)
- Insured/Uninsured Children Who Have Major Disabilities, by City, School District and County (Regions of 65,000 Residents or More)
- Insured/Uninsured Children Who Have Special Health Care Needs, by Type of Insurance (California & U.S. Only)
- Poverty Among Children with Special Health Care Needs, by Race/Ethnicity (California & U.S. Only)
- Special Education Enrollment
- Children with Special Health Care Needs with One or More Adverse Experiences
- Children with Special Health Care Needs Who Are Usually/Always Resilient
- Emotional or Behavioral Difficulties Among Children with Special Health Care Needs (California & U.S. Only)
- Asthma
- Bullying and Harassment at School
- Demographics
- Access to Services for Children with Special Needs
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- Children with Special Health Care Needs Who Need Five or More Services (California & U.S. Only)
- Children with Special Health Care Needs Who Had a Preventive Medical Visit in the Last Year (California & U.S. Only)
- Difficulty Accessing Community-Based Services for Children with Special Health Care Needs (California & U.S. Only)
- Early Intervention for Children with Special Health Care Needs (California & U.S. Only)
- Receipt of Mental Health Services Among Children with Special Health Care Needs Who Need Treatment or Counseling (California & U.S. Only)
- Referrals to Specialty Care for Children with Special Health Care Needs (California & U.S. Only)
- Special Education Participation by Children with Special Health Care Needs (California & U.S. Only)
- Unmet Needs for Health Services Among Children with Special Health Care Needs (California & U.S. Only)
- Unmet Needs for Preventive Dental Services Among Children with Special Health Care Needs (California & U.S. Only)
- Usual Source of Health Care Among Children with Special Health Care Needs (California & U.S. Only)
- Youth with Special Health Care Needs Who Receive Needed Services for the Transition to Adulthood (California & U.S. Only)
- Insurance Coverage for Children with Special Health Care Needs
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- Insurance Coverage for Children with Special Health Care Needs, by Insurance Status (California & Other States Only)
- Insurance Coverage for Children with Special Health Care Needs (Regions of 70,000 Residents or More)
- Consistency of Insurance Coverage, by Special Needs Status (California & U.S. Only)
- Adequacy of Insurance Coverage Among Insured Children, by Special Needs Status (California & U.S. Only)
- Adequacy of Insurance Coverage Among Children with Special Health Care Needs (Regions of 70,000 Residents or More)
- Childhood Adversity and Resilience
- Impact of Special Health Care Needs on Children & Families
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- Children with Special Health Care Needs Whose Conditions Caused Family Financial Problems (California & Other States Only)
- Children with Special Health Care Needs Whose Conditions Consistently and/or Greatly Affect Their Daily Activities (California & U.S. Only)
- Children with Special Health Care Needs Whose Families Spend 11 Hours or More a Week on the Child’s Health Care (California & U.S. Only)
- Children with Special Health Care Needs Whose Family Member(s) Avoided Changing Jobs Due to Health Insurance (California & U.S. Only)
- Children Whose Parents Experienced Stress Due to Parenting, by Child's Special Needs Status (California & U.S. Only)
- Impact of Child's Special Health Care Needs on Parental Employment (California & U.S. Only)
- Out-of-Pocket Expenses for Children with Special Health Care Needs, by Adequacy of Insurance (California & U.S. Only)
- Overnight Hospital Stays Among Children with Special Health Care Needs (California Only)
- Repeating a Grade in School, by Special Needs Status (California & U.S. Only)
- School Days Missed Among Children with Special Health Care Needs (California & U.S. Only)
- Quality of Care for Children with Special Health Care Needs
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- Children with Special Health Care Needs Who Receive Care that Meets Federal Minimum Quality Standards (California & U.S. Only)
- Receipt of Effective Care Coordination for Children with Special Health Care Needs (California & Other States Only)
- Receipt of Family-Centered Health Care for Children with Special Health Care Needs (California & U.S. Only)
- Children with Special Health Care Needs Whose Families Feel Engaged in Shared Decision-Making with Providers (California & U.S. Only)
- Receipt of Care Within a Medical Home for Children with Special Health Care Needs (California & U.S. Only)
- Receipt of Care Within a Medical Home for Children with Special Health Care Needs (Regions of 70,000 Residents or More)
- Low Birthweight and Preterm Births
- Weight
- Why This Topic Is Important
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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.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 - How Children Are Faring
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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.
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
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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 - Research & Links
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- Websites with Related Information
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- Association of Maternal and Child Health Programs (AMCHP)
- California Children's Services Redesign, UCLA Center for Health Policy Research
- California Dept. of Education: Special Education
- Catalyst Center, Boston University Center for Advancing Health Policy and Practice
- Center for Parent Information and Resources, Statewide Parent Advocacy Network (SPAN)
- Center for Studying Disability Policy, Mathematica Policy Research
- Children and Youth with Special Health Care Needs: Professional Resource Guide, Maternal and Child Health Digital Library
- Children's Regional Integrated Service System (CRISS)
- Disability Rights California
- Family Voices
- IDEA Partnership, National Association of State Directors of Special Education
- Lucile Packard Foundation for Children's Health: Program for Children with Special Health Care Needs
- Maternal and Child Health Bureau: Children with Special Health Care Needs, U.S. Dept. of Health and Human Services, Health Resources and Services Administration
- National Academy for State Health Policy (NASHP)
- National Center for Learning Disabilities
- National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention
- Stanford Center for Policy, Outcomes, and Prevention (CPOP)
- Support for Families of Children with Disabilities
- Key Reports and Research
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- Analytic Guidance for the California Children’s Services (CCS) Program, Stanford Center for Policy, Outcomes, and Prevention
- Caring for Children, 2014, Health Affairs, Weil, A. R.
- Children with Disabilities, 2012, The Future of Children
- Children with Special Health Care Needs in California: A Profile of Key Issues, 2013, Lucile Packard Foundation for Children's Health, Child and Adolescent Health Measurement Initiative
- Children with Special Health Care Needs: With Population-Based Data, Better Individual Care Plans, 2015, Pediatrics, Van Cleave, J.
- Hidden in Plain Sight: California Children Using Long-Term Care Services, 2015, Learning Partnerships & Lucile Packard Foundation for Children's Health, Brousseau, R., & MacDonald, S.
- Immigrant Children with Special Health Care Needs and the Affordable Care Act, 2014, Catalyst Center, Wilson, K., & Dworetzky, B. A.
- Immigrant Families, Children with Special Health Care Needs, and the Medical Home, 2016, Pediatrics, Kan, K., et al.
- In Their Own Words: Improving the Care Experience of Families with Children with Special Health Care Needs, 2015, Lucile Packard Foundation for Children’s Health & University of California, San Francisco, Hughes, D.
- Low-Income Children with Special Health Care Needs and the Affordable Care Act, 2014, Catalyst Center, Wilson, K., & Dworetzky, B. A.
- Opportunities for Improving Programs and Services for Children with Disabilities, 2018, National Academies of Sciences, Engineering, and Medicine
- Standards for Systems of Care for Children and Youth with Special Health Care Needs, 2017, Lucile Packard Foundation for Children's Health, Association of Maternal and Child Health Programs & National Academy for State Health Policy
- The State of Learning Disabilities: Understanding the 1 in 5, 2017, National Center for Learning Disabilities, Horowitz, S. H., et al.
- County/Regional Reports
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- Annual Report on the Conditions of Children in Orange County, Orange County Children's Partnership
- Key Indicators of Health by Service Planning Area, 2017, Los Angeles County Dept. of Public Health
- Orange County Community Indicators Report, Orange County Community Indicators Project
- More Data Sources For Characteristics of Children with Special Needs
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- California Health and Human Services Open Data Portal, California Health and Human Services Agency
- Data Resource Center for Child and Adolescent Health, Child and Adolescent Health Measurement Initiative
- DataQuest, California Dept. of Education
- Health, United States, 2018 – Data Finder, National Center for Health Statistics
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