Out-of-Pocket Medical Expenses for Children with Special Health Care Needs, by Type of Health Insurance (California & U.S. Only)
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- Definition: Estimated percentage of children ages 0-17 with special health care needs (CSHCN) whose families had and did not have out-of-pocket expenses related to the child's health in the previous year, by type of health insurance coverage and level of out-of-pocket expenses (e.g., in 2009-2010, 69.7% of California CHSCN with public insurance had less than $250 in out-of-pocket medical expenses in the previous year).
- Data Source: Data Resource Center for Child and Adolescent Health, National Survey of Children with Special Health Care Needs (Dec. 2012).
- Footnote: Children with special health care needs (CSHCN) 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.These estimates are based on a survey of the population and are subject to both sampling and nonsampling error. LNE (Low Number Event) refers to estimates that have been suppressed because the sample sizes are too small to meet standards for reliability. For more information, see https://www.childhealthdata.org/learn-about-the-nsch/archive-prior-year-data-documents-and-resources.
Learn More About Impacts of Special Health Care Needs on Children and Families
- Measures of Impacts of Special Health Care Needs on Children and Families on Kidsdata.org
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Children with special health care needs (CSHCN) 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. On kidsdata.org, indicators related to the impacts of special health care needs on children and families include difficulties faced by CSHCN in and out of school, and impacts on their families' time, employment, finances, and parenting.These measures come from the National Survey of Children's Health and National Survey of Children with Special Health Care Needs, in which data are collected from interviews with parents. Depending on the indicator, estimates are available for California, the U.S., and/or all states other than California (including the District of Columbia).
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- Impacts of Special Health Care Needs on Children and Families
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- Children with Special Health Care Needs Whose Conditions Consistently Affect Their Daily Activities (California & Other States Only)
- School Days Missed Among Children with Special Health Care Needs (California & U.S. Only)
- Repeated Grades in School, by Special Needs Status (California & U.S. Only)
- Overnight Hospital Stays Among Children with Special Health Care Needs (California Only)
- Children with Special Health Care Needs Whose Families Spend 11 or More Hours per Week Providing Care (California & Other States Only)
- Children Whose Parents Feel Aggravation from Parenting, by Special Needs Status (California & U.S. Only)
- Children with Special Health Care Needs Whose Family Members Avoid Changing Jobs to Maintain Health Insurance (California & U.S. Only)
- Children with Special Health Care Needs Whose Health Impacts Family Members' Employment (California & U.S. Only)
- Out-of-Pocket Medical Expenses for Children with Special Health Care Needs, by Type of Health Insurance (California & U.S. Only)
- Children with Special Health Care Needs Whose Conditions Cause Family Financial Problems (California & Other States Only)
- Asthma
- Bullying and Harassment at School
- Characteristics of Children with Special Needs
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- Children with Special Health Care Needs
- Prevalence of Special Health Care Needs Among Children, by Type of Health Insurance (California & U.S. Only)
- Children's Weight Level, by Special Health Care Needs Status (California & U.S. Only)
- Children with Adverse Experiences (Parent Reported), by Number and Special Health Care Needs Status (California & U.S. Only)
- Children Who Are Resilient (Parent Reported), by Special Health Care Needs Status (California & U.S. Only)
- Prevalence of Special Education Disabilities Among Students, by Disability Type
- Children with Major Disabilities
- Children with and without Major Disabilities, by Health Insurance Coverage Status
- Active California Children's Services (CCS) Enrollees, by Age Group
- Children Who Have Received a Developmental Screening
- Student Demographics
- Access to Services for Children with Special Needs
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- Preventive Care Visits, by Special Health Care Needs Status (California & U.S. Only)
- Dental Care Visits, by Special Health Care Needs Status (California & U.S. Only)
- Usual Source of Sick Care, by Special Health Care Needs Status (California & U.S. Only)
- Difficulty Getting Needed Referrals for Children with Special Health Care Needs (California & U.S. Only)
- Treatment or Counseling Services for Children with Special Health Care Needs with Behavioral or Mental Health Conditions (California & U.S. Only)
- Early Intervention or Special Education Services, by Special Health Care Needs Status (California & U.S. Only)
- School Provides Services for Students with Special Needs (Staff Reported)
- Unmet Health Care Needs, by Special Health Care Needs Status (California & U.S. Only)
- Children's Emotional Health
- Cancer
- Childhood Adversity and Resilience
- Quality of Care for Children with Special Health Care Needs
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- Receipt of Care in a Well-Functioning Health System, by Special Health Care Needs Status (California & U.S. Only)
- Adequacy of Health Insurance Coverage, by Special Health Care Needs Status (California & U.S. Only)
- Consistency of Health Insurance Coverage, by Special Health Care Needs Status (California & U.S. Only)
- Shared Decision-Making Between Providers and Families, by Special Health Care Needs Status (California & U.S. Only)
- Receipt of Care Within a Medical Home, by Special Health Care Needs Status (California & U.S. Only)
- Receipt of Family-Centered Care, by Special Health Care Needs Status (California & U.S. Only)
- Receipt of Needed Care Coordination, by Special Health Care Needs Status (California & U.S. Only)
- Dental Care
- School Attendance and Discipline
- Health Care
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- Health Insurance Coverage, by Type and Age Group
- Health Insurance Coverage Status, by Race/Ethnicity
- Medicaid (Medi-Cal) or Children's Health Insurance Program (CHIP) Coverage
- Medicaid (Medi-Cal) or CHIP Coverage, by Age Group (California & U.S. Only)
- Medicaid (Medi-Cal) and CHIP Yearly Enrollment (California & U.S. Only)
- Uninsured at Any Point in Past Year
- Medical Care Delayed or Forgone in Past Year
- Length of Time Since Teen's Last Check-Up
- Usual Source of Health Care
- Receipt of Care Within a Medical Home
- School Health Centers
- School Provides Adequate Health Services (Staff Reported)
- Health Status
- Injuries
- Low Birthweight and Preterm Births
- Weight
- Why This Topic Is Important
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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). For example, parents of CSHCN may need to cut back their work hours or give up a job, at the same time that they face higher than average out-of-pocket medical expenses (2, 3, 5). Families of CSHCN may also spend significant time providing care, learning about their child's condition and available treatments, and coordinating their child's care across providers and services (5).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
5. Anderson, B., et al. (2017). The eye of the beholder: A discussion of value and quality from the perspective of families of children and youth with special health care needs. Pediatrics, 139(Suppl. 2), S99-S108. Retrieved from: https://publications.aap.org/pediatrics/article-abstract/139/Supplement_2/S99/34123/The-Eye-of-the-Beholder-A-Discussion-of-Value-and - How Children Are Faring
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In 2016-2019, an estimated 45% of California children with special health care needs (CSHCN) ages 6-17 had missed more than 3 days of school in the previous year because of illness or injury, and 14% had missed more than 10 school days. Statewide, an estimated 6.6% of school-aged CSHCN had repeated at least one grade in school since entering kindergarten, compared with 3.9% of their peers without special health care needs.
According to estimates from the same survey, 19% of California CSHCN ages 0-17 had family members who cut back or stopped working in the previous year because of their child's health, and 12% had family members who avoided changing jobs in the previous year because of concerns about maintaining health insurance.
More than one in five California CSHCN (21%) had parents who felt aggravation from parenting in the previous month, compared with 16% of CSHCN nationally, 2.9% of non-CSHCN in California, and 2.3% of non-CSHCN nationwide, according to 2016-2019 estimates. - Policy Implications
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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:- 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).
For more information, see kidsdata.org’s Research & Links section or visit Lucile Packard Foundation for Children's Health.
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 - Research & Links
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- Websites with Related Information
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- Association of Maternal and Child Health Programs (AMCHP)
- 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
- Got Transition: Resources and Research. National Alliance to Advance Adolescent Health.
- Health Affairs. Project HOPE.
- Lucile Packard Foundation for Children's Health: Program for Children with Special Health Care Needs
- Maternal and Child Health Bureau: Children and Youth with Special Health Care Needs. U.S. Dept. of Health and Human Services.
- Mathematica: Disability
- National Academy for State Health Policy (NASHP)
- Support for Families of Children with Disabilities
- Key Reports and Research
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- 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.
- Blueprint for Change: A National Framework for a System of Services for Children and Youth with Special Health Care Needs. (2022). Pediatrics. Brown, T. W., et al. (Eds.).
- Building Systems that Work for Children with Complex Health Care Needs. (2018). Pediatrics. Agrawal, R., & Stille, C. (Eds.)
- 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.
- Fundamentals of Financing the System of Care for Children and Youth with Special Health Care Needs (CYSHCN) (2019). Catalyst Center. Comeau, M., et al.
- 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.
- Maltreatment of Children with Disabilities. (2021). Pediatrics. Legano, L. A., et al.
- Patient- and Family-Centered Care Coordination: A Framework for Integrating Care for Children and Youth Across Multiple Systems. (2018). Pediatrics. American Academy of Pediatrics, Council on Children with Disabilities & Medical Home Implementation Project Advisory Committee.
- Psychosocial Factors in Children and Youth with Special Health Care Needs and Their Families. (2019). Pediatrics. Mattson, G., et al.
- 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.
- The 2020 Federal Youth Transition Plan: A Federal Interagency Strategy. (2015). Federal Partners in Transition Workgroup.
- More Data Sources For Impacts of Special Health Care Needs on Children and Families
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- Data Resource Center for Child and Adolescent Health. Child and Adolescent Health Measurement Initiative.
- National Survey of Children's Health. Child and Adolescent Health Measurement Initiative.
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