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 access to services for CSHCN include:

• Access to a usual source of health care
• Access to a variety of services, including medical, mental, and dental care, as well as community- and school-based services, early intervention, special education, and transition to adulthood services

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).

According to data from parents and caregivers surveyed in 2016, 2017, and 2019, an estimated 86% of California children with special health care needs (CSHCN) ages 0-17 had received a preventive health check-up in the previous year. During the four-year period 2016-2019, around one in three California CSHCN ages 1-17 (32%) received services under an early intervention or special education plan. Among CSHCN nationally, estimates of receipt of preventive medical visits and early intervention or special education services were similar.

Among California CSHCN ages 3-17 with one or more provider-diagnosed behavioral or mental health conditions—attention deficit disorder (ADD) or attention-deficit/hyperactivity disorder (ADHD), anxiety problems, behavioral or conduct problems, or depression—58% had received treatment or counseling in the previous year, according to 2017-2021 data from the same survey. By comparison, nationwide, 62% of CSHCN with diagnosed conditions had received treatment or counseling in the previous year.

In 2017-2019, more than 48% of responses by staff at California elementary, middle, high, and non-traditional schools reported that services for students with disabilities or other special needs were provided a lot. The share of responses by non-traditional program staff reporting that their school provides services for students with special needs a lot rose from less than 37% in 2011-2013 to more than 48% in 2017-2019.

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).