Health Coverage of Children with Special Health Care Needs, by Type of Insurance
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Learn More About Insurance Coverage for Children with Special Health Care Needs (State-Level Data)

Measures of Insurance Coverage for Children with Special Health Care Needs (State-Level Data) on Kidsdata.org
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. On kidsdata.org, indicators related to insurance coverage for CSHCN include adequacy of health insurance, consistency of coverage, and the overall percentage of children with insurance. Additional measures related to access to and quality of care for CSHCN, demographics, and the impact of chronic conditions are available at www.kidsdata.org/cshcn. These data come from the National Survey of Children with Special Health Care Needs and the National Survey of Children's Health, and are available only at the state and national level. The surveys are conducted through telephone interviews with parents.
Insurance Coverage for Children with Special Health Care Needs (State-Level Data)
Demographics of Children with Special Needs
Access to Services for Children with Special Health Care Needs (State-Level Data)
Impact of Special Health Care Needs on Children & Families (State-Level Data)
Quality of Care for Children with Special Health Care Needs (State-Level Data)
Health Care
Hospitalizations
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 activities important to their education and social participation. In some cases their health problem can shorten their lives (1). Medical care of children with special health care needs is often complicated by the co-occurrence of social, emotional, and academic problems (1, 2). Because of the higher caregiving burdens of families of children with special needs, families tend to experience more difficulties in the areas of employment, child care, and parental stress than families of other children (1, 2). 

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).

Access to health insurance is an essential step in ensuring that children with special health care needs receive needed health care. Studies suggest that children without health insurance are less likely to receive necessary preventive and acute care. Having health insurance is particularly important for children with special health care needs, as coverage is associated with improved health care quality, fewer unmet needs, and having a usual source of care (1).
For more information on this topic, see kidsdata.org’s Research & Links section and our Program for Children with Special Health Care Needs site.

Sources for this narrative: 

1.  Lucile Packard Foundation for Children’s Health and Child and Adolescent Health Measurement Initiative. (2013). Children with special health care needs in California: A profile of key issues. Retrieved from: http://lpfch-cshcn.org/publications/research-reports/children-with-special-health-care-needs-in-california-a-profile-of-key-issues

2.  Quach, J., et al. (2015). Trajectories and outcomes among children with special health care needs. Pediatrics135(4), e842-e850. Retrieved from: http://pediatrics.aappublications.org/content/early/2015/03/11/peds.2014-2431.
How Children Are Faring
Although only 3.5% of California’s children with special health care needs are uninsured, just 67.7% of those who are insured have consistent and adequate coverage to meet their health needs, according to 2009-10 data. Among children with special needs statewide, 60% had private insurance, 28.1% had public insurance, and 8.3% had both private and public insurance in 2009-10. Children with public insurance are more likely to face challenges accessing quality health care; for example, publicly insured children with special health care needs are less likely to receive care that meets federal minimum quality standards, such as receiving routine preventive care and having easy access to community-based services.*

* Lucile Packard Foundation for Children’s Health & Child and Adolescent Health Measurement Initiative. (2013). Children with Special Health Care Needs in California: A Profile of Key Issues

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 being assured that all their care is comprehensive, coordinated, and of high quality. They also may experience difficulty attending school and participating in recreational activities. Their families may have to manage economic, social and personal burdens in excess of those of a typical family (1, 2, 3, 4).

According to research and subject experts (5), policies and programs to promote the health and well-being of children and youth with special health care needs 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. These children also need consistent coverage, without gaps that can cause delays or problems receiving critical specialty services (1). Appropriate reimbursement also is critical to maintaining an adequate provider network (6).
  • 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 (4, 7, 8).
  • 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 health care and families should be included as partners in all health care decision-making for CYSHCN (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 care (1).
  • 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 (4).
  • 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 (6, 8), as well as ensuring adequate funding for special education services (9).
For more policy ideas, see kidsdata.org’s Research & Links section and our Program for Children with Special Health Care Needs site.

Sources for this narrative:

1.  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/

2.  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

3.  Okumura, M. J., et al. (2009). Understanding factors associated with work loss for families caring for CSHCN. 
Pediatrics, 124(Suppl. 4), S393-S398. Retrieved from: http://pediatrics.aappublications.org/cgi/content/abstract/124/Supplement_4/S392

4.  Lucile Packard Foundation for Children’s Health and Child and Adolescent Health Measurement Initiative. (2013). 
Children with special health care needs in California: A profile of key issues. Retrieved from http://lpfch-cshcn.org/publications/research-reports/children-with-special-health-care-needs-in-california-a-profile-of-key-issues   

5.  Association of Maternal & Child Health Programs and Lucile Packard Foundation for Children’s Health. (2014). 
Standards for systems of care for children and youth with special health care needs. Retrieved from: http://lpfch-cshcn.org/publications/research-reports/developing-structure-and-process-standards-for-systems-of-care-serving-children-and-youth-with-special-health-care-needs/

6.  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/ 

7.  Gans D., et al. (2013).
 Assuring children’s access to pediatric subspecialty care in California. UCLA Center for Health Policy Research and Lucile Packard Foundation for Children’s Health. Retrieved from: http://lpfch-cshcn.org/publications/issue-briefs/assuring-childrens-access-to-pediatric-subspecialty-care-in-california/

8.  Association of Maternal & 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/

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
Key Reports
County/Regional Reports
More Data Sources For Insurance Coverage for Children with Special Health Care Needs (State-Level Data)