Children with special health care needs (CSHCN), like all young people, need ready access to appropriate medical care, educational opportunities, and, sometimes, mental health care, social services, and other support. CSHCN, especially those with more complex conditions, may face challenges in obtaining timely access to pediatric subspecialty providers and in 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, as well (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 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, 2).
- 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 (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 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 (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 and Lucile Packard Foundation for Children's Health's program for children with special health care needs.
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://pediatrics.aappublications.org/content/143/1/e20183171
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://pediatrics.aappublications.org/content/141/Supplement_3/S212
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. 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://pediatrics.aappublications.org/content/141/Supplement_3/S259