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Quality of Care for Children with Special Health Care Needs (see data for this topic)

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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). Improving access to quality care is critical to the health and well being of CSHCN; as these children depend more on the health care system than children without special needs, the quality of services has a greater impact on their lives and their families’ experiences (5).

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). These challenges are exacerbated by racial/ethnic and socioeconomic inequities in access to care and other supports, which can lead to poorer outcomes for vulnerable CSHCN and their families (2, 3).
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.  Lichstein, J. C., et al. (2018). Access to the medical home among children with and without special health care needs. Pediatrics, 142(6), e20181795. Retrieved from: https://publications.aap.org/pediatrics/article/142/6/e20181795/76857/Access-to-the-Medical-Home-Among-Children-With-and
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:
  • 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
How Children Are Faring
An estimated 61% of children ages 0-17 with special health care needs (CSHCN) in California, and 57% nationwide, do not receive health care meeting American Academy of Pediatrics standards for a medical home—accessible, continuous, coordinated, compassionate, comprehensive, culturally effective, family-centered primary care—according to 2016-2020 data. Among CSHCN with more complex health care needs (i.e., conditions not managed primarily through prescription medication), the share is even larger—65% in California. U.S. estimates also show higher percentages of CSHCN with public or no health insurance coverage, CSHCN with lower family incomes, and older CSHCN failing to receive care that meets medical home standards.

In 2016-2019, among California CSHCN who saw a health care provider in the previous year, one in five (20%) did not receive family-centered care (in which the provider listens carefully to the family, shows sensitivity to the family's values and customs, provides the family needed information concerning the child, and helps the family feel like a partner in the child's care), and among CSHCN who saw two or more health care providers in the previous year, more than one in three (36%) did not receive effective care coordination between their providers and services.