Download & Other Tools
- Definition: Number of public school children in grades K-12 receiving special education services.Percentage of public school children in grades K-12 receiving special education services.
- Data Source: Special Tabulation by the California Dept. of Education, Special Education Division; Assessment, Evaluation and Support (Nov. 2013); California Dept. of Education, California Basic Educational Data System (CBEDS); National Center for Education Statistics. (2013). Table 204.30: Children 3 to 21 years old served under Individuals with Disabilities Education Act (IDEA), Part B, by type of disability: Selected years, 1976-77 through 2011-12. Digest of Education Statistics (Nov. 2013).
- Footnote: Data for California reflect special education enrollment among children in grades K through 12, while data for the U.S. reflect enrollment among children in grades pre-K through 12. Years presented are the final year of a school year (e.g., 2012-2013 is shown as 2013). Data show the district of residence; that is, the district in which students live. Some students with disabilities access services outside their district of residence. LNE (Low Number Event) refers to data that have been suppressed because there were fewer than 20 students enrolled in special education. N/A means that data are not available.
- Measures of Demographics of Children with Special Needs on Kidsdata.org
On kidsdata.org, indicators related to children with special health care needs include national- and state-level data on demographics, the impact of conditions on children and their families, health insurance coverage, and access to and quality of health care and other services (1). See http://www.kidsdata.org/cshcn/ for a full list of indicators.
Kidsdata.org also provides the number and percent of children under 18 with major disabilities, as 1-year, 3-year and 5-year estimates. These data are provided overall and by health insurance coverage status. The 5-year estimates also are available by legislative district (2).
In addition, the number of public school students enrolled in special education by county and school district is available, as is the number and percent by disability and by race/ethnicity at the county level (3).
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 (4).
- These data come from the National Survey of Children with Special Health Care Needs and the National Survey of Children's Health. On these surveys, children with special health care needs (CSHCN) are defined as those who have a chronic physical, developmental, behavioral, or emotional condition and who also experience consequences due to their condition, such as above-routine use of health and related services or limitations in activities compared to other children.
- These data come from the American Community Survey, in which children are classified as having disabilities if they have serious difficulties in one or more of the following areas: hearing, vision, cognitive ability (asked only of ages 5-17), ambulatory ability (asked of ages 5-17), self-care (asked of ages 5-17), or independent living (asked of ages 15-17).
- Special education gives students with specific disabilities access to a 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 youth ages 19-22 account for about 10%.
- These data come from a report compiled by the Stanford University Center for Policy, Outcomes and Prevention. The CCS program helps to 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 'children with special health care needs'.
- Demographics of Children with Special Needs
- Active California Children's Services (CCS) Enrollees, by Age and County
- Children with Special Health Care Needs (California & U.S. Only)
- Children with Four or More Functional Difficulties, by Type of Insurance (California & U.S. Only)
- Overweight or Obese Children, by Special Needs Status (California & U.S. Only)
- Percentage of Insured/Uninsured Children Who Have Special Health Care Needs (California & U.S. Only)
- Poverty Among Children with Special Health Care Needs, by Race/Ethnicity (California & U.S. Only)
- Children with Major Disabilities, by City, School District, and County (Regions of 65,000 Residents or More)
- Percentage of Insured/Uninsured Children Who Have Major Disabilities, by City, School District, and County (Regions of 65,000 Residents or More)
- Special Education Enrollment
- Bullying and Harassment at School
- Births to Unmarried Women (California & U.S. Only)
- Child Population
- Children in Rural and Urban Areas (California & U.S. Only)
- Public School Enrollment
- Total Population
- Access to Services for Children with Special Health Care Needs (State-Level Data)
- Children with Special Health Care Needs Who Needed Five or More Services
- Children with Special Health Care Needs Who Had Preventive Medical Visit in the Last Year
- Difficulty Accessing Community-Based Services for Children with Special Health Care Needs
- Early Intervention for Children with Special Health Care Needs
- Referrals to Specialty Care for Children with Special Health Care Needs
- Special Education Participation by Children with Special Health Care Needs
- Unmet Medical Care Needs Among Children with Special Needs
- Unmet Needs for Mental Health Care Among Children with Special Health Care Needs
- Unmet Needs for Preventive Dental Care Among Children with Special Health Care Needs
- Usual Source of Health Care Among Children with Special Health Care Needs
- Youth with Special Health Care Needs Who Received Needed Services for the Transition to Adulthood
- Insurance Coverage for Children with Special Health Care Needs (State-Level Data)
- Impact of Special Health Care Needs on Children & Families (State-Level Data)
- Emotional or Behavioral Difficulties Among Children with Special Health Care Needs
- Children with Special Health Care Needs Whose Conditions Consistently and/or Greatly Affect Their Daily Activities
- Repeating a Grade in School, by Special Needs Status
- School Days Missed Among Children with Special Health Care Needs
- Children with Special Needs Whose Families Spend 11 Hours or More a Week on the Child’s Health Care
- Children Whose Parents Experienced Stress Due to Parenting, by Child's Special Needs Status
- Impact of Child's Special Health Care Needs on Parental Employment
- Out-of-Pocket Expenses for Children with Special Health Care Needs, by Adequacy of Insurance
- Overnight Hospital Stays Among Children with Special Health Care Needs
- Children with Special Health Care Needs Whose Conditions Caused Family Financial Problems
- Children with Special Health Care Needs Whose Family Member(s) Avoided Changing Jobs Due to Health Insurance
- Quality of Care for Children with Special Health Care Needs (State-Level Data)
- Children with Special Health Care Needs Who Receive Care that Meets Federal Minimum Quality Standards
- Receipt of Effective Care Coordination for Children with Special Health Care Needs
- Family-Centered Health Care for Children with Special Health Care Needs
- Children with Special Health Care Needs Whose Families Feel Engaged in Shared Decision-Making With Providers
- Medical Home for Children with Special Health Care Needs
- Low Birthweight and Preterm Births
- 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, mental, or emotional -- can affect their ability to function and participate in activities important to their education and development. In some cases their health problem, especially if not treated appropriately, can shorten their lives (1). The care of children with special health care needs is often complicated by the co-occurrence of mental health problems, depression and anxiety along with their chronic physical health conditions (1, 2). Because of the higher caregiving burdens of families of children with special needs, they tend to experience more difficulties in the areas of employment, child care, and parental stress than families of other children (1).
By definition, children with special health care needs require more health care services than other children, and they account for more than 40% of all health care costs among children nationwide despite making up only 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 children with special health care needs 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 children with special health care needs reach their maximum health potential.Nationally and in California, the majority of children with specific disabilities receive special education services; the most common condition among children in special education is learning disabilities (3). There are many forms of learning disabilities, which can affect speaking, reading, writing, thinking, and/or computing (4). Many of these conditions go unrecognized. Students with learning disabilities tend to have lower high school graduation and college enrollment rates, and, as adults, have higher rates of unemployment (4).
For more information on this topic, see kidsdata.org’s Research & Links section.
Sources for this narrative:
1. Lucile Packard Foundation for Children’s Health & Child and Adolescent Health Measurement Initiative. (2013). Retrieved from: Children with Special Health Care Needs in California: A Profile of Key Issues
2. Blanchard, L. T., et al. (2006). Emotional, developmental, and behavioral health of American children and their families: A report from the 2003 National Survey of Children’s Health. Pediatrics, 117(6), e1202-1212. Retrieved from: http://pediatrics.aappublications.org/content/117/6/e1202.full.
3. As cited on kidsdata.org, Special education enrollment, by disability. (2013). Special Tabulation by the State of California, Department of Education, Special Education Division; Assessment, Evaluation and Support.
4. Cortiella, C. (2011). The state of learning disabilities: Facts, trends, and indicators. New York, NY: National Center for Learning Disabilities. Retrieved from: http://www.ncld.org/types-learning-disabilities/what-is-ld/state-of-learning-disabilities
- How Children Are Faring
An estimated 15% — approximately 1.4 million — California children under age 18 have a special health care need. Commonly reported conditions among California children with special health care needs include allergies, asthma, attention deficit and hyperactivity disorder, and developmental delay. More than half of California’s children with special health care needs have two or more chronic conditions, and many of these children have very complex needs. In 2012, almost 130,000 such children and youth were active enrollees in the California Children's Services (CCS) program (i.e., they were enrolled for at least 6 months with an eligible CCS diagnosis).
A smaller percentage of California children have major disabilities, 3.1% according to 2010-12 data, meaning they have serious impairments in vision, hearing, walking, cognition, or self-care, according to the American Community Survey. It is estimated that 2.1% of uninsured children in California had one or more disabilities in 2010-12. Estimates of children with major disabilities vary widely at the community level.
Students with learning disabilities and speech or language impairments together comprise the majority of students in special education in California, about two-thirds of all special education students in 2013. The percentage of students enrolled in special education for autism grew at a particularly fast rate in recent years, increasing from 2.2% to 10.4% between 2002 and 2013. In fact, the percentage of students with autism in special education increased in all counties with available data in that same period.
- Policy Implications
Children and youth with special health care needs (CSHCN), like all young people, need consistent access to appropriate medical, educational, and social services and opportunities. For children with special health care needs, especially those with more complex conditions, common challenges include access to high-quality, coordinated and consistent medical care; difficulty participating in school and recreational activities; and family economic insecurity due to medical costs and caregiving demands (1, 4, 6, 8).
According to research and subject experts, policies to promote the health and well being of children with special health care needs 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 specialty services (1).
- High-quality, well-coordinated, and consistent services: CSHCN benefit from evidence-based health care services tailored to specific and complex health needs; these services should be well-coordinated with one another and provided in the context of a “medical home” (2, 3, 8). Quality, consistent services depend on having adequate numbers of primary and specialty care providers serving CSHCN; policies and programs should address training and education toward this end. Appropriate reimbursement also is critical to maintaining an adequate provider network (7).
- Family-centered care: Children and youth exist within the context of their families. The values, strengths, cultural norms, and priorities of families should be met with sensitivity and integrated into health services. Families also should be included as partners in all health care decision-making for CSHCN (1).
- 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 health or educational services (1).
- 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 (5).
- 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 (1, 5, 8).
- 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 services (3, 7), as well as ensuring adequate funding for special education services (9).
For more policy ideas related to children with special health care needs, see the Research & Links section on this page.
Sources for this narrative:
1. U.S. Department of Health and Human Services, Health Resources and Services Administration. (2006). The National Survey of Children with Special Health Care Needs Chartbook 2005-2006. Retrieved from: http://mchb.hrsa.gov/cshcn05/
2. Inkelas, M., et al. (2004). Access to health care for California’s children with special health care needs: Chartbook. UCLA Center for Healthier Children, Families and Communities.
3. Association of Maternal and Child Health Programs and Lucile Packard Foundation for Children’s Health. (2009). Models of care for children and youth with special health care needs: Promising models for transforming California’s system of care. Retrieved from: http://www.lpfch.org/nationalmodels/
4. Peterson, S., et al. (2007). Quality care for special kids; Profiles of children with chronic conditions and disabilities. Mathematica Policy Research Inc. & U.S. Health Resources and Services Administration. Retrieved from: http://www.mathematica-mpr.com/publications/PDFs/qualitycareupdate4.pdf
5. Lucile Packard Foundation for Children’s Health & Child and Adolescent Health Measurement Initiative. (2010). Children with special health care needs: A profile of key issues facing CSHCN in California. Retrieved from: http://www.lpfch.org/specialneeds/
6. Okumura, M., et al. (2009). Understanding factors associated with work loss for families caring for CSHCN. Pediatrics, 124(4), S393-S398. Retrieved from: http://pediatrics.aappublications.org/cgi/content/abstract/124/Supplement_4/S392
7. Lucile Packard Foundation for Children’s Health. (2009). California's service system for children and youth with special health care needs: Analysis and recommendations for a service system that works for children and families. Retrieved from: http://www.lpfch.org/californiaservicesystem/
8. Lucile Packard Foundation for Children’s Health & Child and Adolescent Health Measurement Initiative. (2013). Retrieved from: Children with Special Health Care Needs in California: A Profile of Key Issues
9. Minow, M. L. (2001). Funding mechanisms in special education. National Center on Accessing the General Curriculum. Retrieved from: http://www.cast.org/publications/ncac/ncac_funding.html
- Websites with Related Information
- Affordable Colleges Online: College Affordability for Students with Disabilities
- Agency for Health Care Research & Quality: Children with Special Health Care Needs/Chronic Conditions
- Association of Maternal and Child Health Programs
- California Children with Special Health Care Needs
- Catalyst Center
- Center for Applied Special Technology (CAST)
- Center for Studying Disability Policy
- Centro Nacional de Diseminación de Información para Niños con Discapacidades
- Children and Adolescents with Special Health Care Needs Knowledge Path
- Children's Regional Integrated Service System
- Disability Rights California
- Family Voices
- Going to College
- IDEA Partnership
- Individuals with Disabilities Education Act (IDEA)
- Lucile Packard Foundation for Children's Health
- Maternal and Child Health Information Resource Center
- National Academy for State Health Policy (NASHP)
- National Center for Learning Disabilities
- National Center for Special Education Research
- National Center on Birth Defects and Developmental Disabilities
- National Dissemination Center for Children with Disabilities (NICHCY)
- National Survey of Children with Special Health Care Needs
- Special Education
- Stanford Center for Policy, Outcomes and Prevention (CPOP)
- Support for Families of Children with Disabilities
- The Commonwealth Fund
- U.S. Department of Education, Office of Special Education Programs
- Key Reports
- Assessing the California Children's Services Program
- Breaking the Link Between Special Health Care Needs and Financial Hardship
- Building Strong Systems of Support for Young Children’s Mental Health: Key Strategies for States and a Planning Tool
- California's Service System for Children with Special Health Care Needs: Analysis and Recommendations for a Service System That Works for Children and Families
- Children and Youth with Disabilities and Special Health Care Needs from Traditionally Underserved Communities (Journal Supplement 3)
- Children with Disabilities
- Children with Special Health Care Needs in California: A Profile of Key Issues
- Household Language Use and Health Care Access, Unmet Need, and Family Impact Among CSHCN
- Including Safety-Net Providers in Integrated Delivery Systems: Issues and Options for Policymakers
- National Early Intervention Longitudinal Study (NEILS)
- Parent-Provider-Community Partnerships: Optimizing Outcomes for Children With Disabilities
- Public Insurance Programs and Children with Special Health Care Needs, A Tutorial on the Basics of Medicaid and the Children’s Health Insurance Program
- Six Models for Understanding How Families Experience the System of Care for Children with Special Health Care Needs: An Ethnographic Approach
- Students with Disabilities and California's Special Education Program
- Study Shows That Insurance Coverage Is Critical For Children With Special Health Care Needs As They Transition To Adulthood
- Systems of Care Coordination for Children: Lessons Learned Across State Models
- The Affordable Care Act and Children with Special Health Care Needs: An Analysis and Steps for State Policymakers
- The Youngest Americans: A Statistical Portrait of Infants and Toddlers in the United States
- Who Is at Risk for Special Health Care Needs: Findings from the National Survey of Children's Health
- County/Regional Reports