Children with special health care needs (CSHCN) 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 on the impact of special health care needs include difficulties faced by CSHCN, effects on their school, and impacts on parental stress, time, finances, and employment.

See kidsdata.org's CSHCN category for the full list of indicators related to CSHCN, including data on demographics, access to care, quality of care, and health insurance coverage. 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. Depending on the indicator, data are available for California, the U.S., all states other than California (including the District of Columbia), and/or geographies with at least 70,000 residents (as local area synthetic estimates based on American Community Survey data from the U.S. Census Bureau).

In California there are more than one million children and youth whose needs for health care services are greater or more complex than children generally. Their ongoing health problems—physical, behavioral, or developmental—can affect their ability to function and participate in important educational and social activities (1). 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). For example, the demands on families of CSHCN may require that parents cut down their work hours or give up a job, at the same time that they face higher than average out-of-pocket health care costs (1). Having a child with special needs also is a significant time commitment. Families of CSHCN may spend large amounts of time providing care, learning about their child’s condition and available services, and/or coordinating their child’s care (1).

CSHCN account for more than 40% of all health care costs among children nationwide, despite making up less than 20% 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).

Nearly 30% of children with special health care needs (CSHCN) in California have conditions that impact their daily lives, according to 2009-2010 data. In addition, in 2011-2012, a larger proportion of CSHCN had parents who experienced stress from parenting (28%) compared with other children in California (12%) and compared with children with and without special health care needs in the U.S. (23% and 9%, respectively). Across California counties with data, 22% to 33% of CSHCN had parents who experienced parental stress.

In 2009-2010, almost one-quarter of California's CSHCN (24%) had conditions that caused family financial problems. About 16% of CSHCN had families that spent 11+ hours per week providing and/or coordinating care for the child, an increase from 9% in 2005-2006.

Some data show disparities by complexity of health needs, poverty level, insurance type, and race/ethnicity. For example, 29% of CSHCN in California have conditions that cause their families to cut back or stop working, according to 2009-2010 estimates. However, among CSHCN who have conditions that require more than just prescription medication, 41% have families that cut back or stop working. Furthermore, 46% of CSHCN in families at the lowest poverty level (0-99%) and 45% of CSHCN using public insurance have families that cut back or stop working. These rates also differ by race/ethnicity—20% of white, 26% of African American/black, and 36% of Hispanic/Latino CSHCN have conditions that cause their families to cut back or stop working.*

Children with special health care needs (CSHCN), like all young people, need ready access to appropriate medical care, educational opportunities, and, sometimes, social services. CSHCN, 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 CSHCN (1, 3).

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 (1, 4, 5). These children also need 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: CSHCN 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 children’s lives 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 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 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, 4).
• 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 (1, 2, 4, 7).