Research and Links
Characteristics of Children with Special Needs (see data for this topic)
- Websites with Related Information
- Association of Maternal and Child Health Programs (AMCHP)
- California Dept. of Education: Special Education
- California Dept. of Health Care Services: California Children's Services
- Catalyst Center. Boston University School of Social Work.
- Center for Parent Information and Resources. Statewide Parent Advocacy Network.
- 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.
- Mathematica: Disability
- 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.
- Support for Families of Children with Disabilities
- Key Reports and Research
- A State Multi-Sector Framework for Supporting Children and Youth with Special Health Care Needs. (2018). Lucile Packard Foundation for Children’s Health. Child Trends.
- Assessing ESSA: Missed Opportunities for Students with Disabilities. (2018). National Center for Learning Disabilities. Turner, M., et al.
- Children with Special Health Care Needs Face Challenges Accessing Information, Support, and Services. (2020). Child Trends. Abdi, F. M., et al.
- Children with Special Health Care Needs: NSCH Data Brief. (2020). Health Resources and Services Administration, Maternal and Child Health Bureau.
- Confronting Inequities in California’s Funding of Services for Children with Developmental Disabilities: A Sobering View of Our Current Standpoint. (2020). Lucile Packard Foundation for Children’s Health. Public Counsel.
- Fulfilling the Promise of IDEA. (2018). American Institutes for Research.
- Hidden in Plain Sight: California Children Using Long-Term Care Services. (2015). Lucile Packard Foundation for Children's Health & Learning Partnerships. Brousseau, R., & MacDonald, S.
- 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.
- Opportunities for Improving Programs and Services for Children with Disabilities. (2018). National Academies Press. National Academies of Sciences, Engineering, and Medicine.
- Psychosocial Factors in Children and Youth with Special Health Care Needs and Their Families. (2019). Pediatrics. Mattson, G., et al.
- Significant Disproportionality in Special Education: Current Trends and Actions for Impact (2020). National Center for Learning Disabilities.
- Standards for Systems of Care for Children and Youth with Special Health Care Needs: Version 2.0. (2017). Lucile Packard Foundation for Children's Health. Association of Maternal and Child Health Programs, et al.
- County/Regional Reports
- 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 Business Council, et al.
- More Data Sources For Characteristics of Children with Special Needs
- California Health and Human Services Open Data Portal. California Health and Human Services Agency.
- California Health Interview Survey. UCLA Center for Health Policy Research.
- Data Resource Center for Child and Adolescent Health. Child and Adolescent Health Measurement Initiative.
- DataQuest. California Dept. of Education.
- Health, United States – Data Finder. National Center for Health Statistics.
- National Survey of Children's Health. Child and Adolescent Health Measurement Initiative.
Learn More About This Topic
- Why This Topic Is Important
Nearly 1.4 million California children and youth, and more than 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). More than 4 in 5 children with special health care needs (CSHCN) statewide and nationally 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 or visit Lucile Packard Foundation for Children's Health.
Sources for this narrative:
1. Data Resource Center for Child and Adolescent Health. (n.d.). 2020-2021 National Survey of Children's Health data query: Percent of children, ages 0 through 17, with special health care needs (CSHCN). Child and Adolescent Health Measurement Initiative & U.S. Department of Health and Human Services. Retrieved from: https://www.childhealthdata.org/browse/survey/results?q=9611&r=1&r2=6
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://publications.aap.org/pediatrics/article/143/1/e20183171/37296/Psychosocial-Factors-in-Children-and-Youth-With
4. Data Resource Center for Child and Adolescent Health. (n.d.). 2020-2021 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=9612&r=1&r2=6
- Policy Implications
Children with special health care needs (CSHCN), like all young people, need ready access to appropriate physical and mental health care, educational opportunities, and, sometimes, social services and other support. CSHCN, especially those with more complex conditions, may face challenges in obtaining timely access to pediatric subspecialty providers and 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:
For more information, see kidsdata.org’s Research & Links section or visit Lucile Packard Foundation for Children's Health.
- 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 (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 health management plans agreed upon with providers. Families’ values, beliefs, goals, and priorities should help guide care plans and families should be included as partners in decision-making (1, 2).
- Early and frequent 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 transitions to adulthood: As CSHCN age, they need support from 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 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).
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://publications.aap.org/pediatrics/article/143/1/e20183171/37296/Psychosocial-Factors-in-Children-and-Youth-With
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://publications.aap.org/pediatrics/article-abstract/141/Supplement_3/S212/34448/Models-of-Care-Delivery-for-Children-With-Medical
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. National Academies Press. 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://publications.aap.org/pediatrics/article-abstract/141/Supplement_3/S259/34447/Evolving-Federal-and-State-Health-Care-Policy
- 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.
According to 2017-2021 data from the same survey, 54% of California CSHCN ages 3-17 had one or more provider-diagnosed mental health conditions—attention deficit disorder (ADD) or attention-deficit/hyperactivity disorder (ADHD), anxiety problems, behavioral or conduct problems, or depression—similar to the national figure of 56%.
More than one in eight California public school students ages 0-22 received special education services for a disability in 2020. 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 2020, from 10.6 students per 1,000 to 20.3 per 1,000, mirroring national trends. At the local level, rates of autism ranged from fewer than 10 students per 1,000 to more than 25 per 1,000 across counties with data in 2020.
Children with major disabilities represent 3.4% of California's child population, according to 2016-2020 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 with data, the percentage of children with major disabilities ranged from less than 2% to more than 7% in 2016-2020. Statewide, an estimated 3.5% of children with health insurance coverage ages 0-18 had major disabilities, compared with 3.1% 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%).
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