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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
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 important educational and social activities. 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).

CSHCN account for more than 40% of all health care costs among children nationwide, despite making up only about 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 CSHCN do not receive one or more basic aspects of quality health care, in California and nationally (1). Increasing access to quality care is critical to improving 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 health services has a greater impact on their lives and their families’ experiences (1, 2).
For more information, see kidsdata.org’s Research & Links section and our Program for Children with Special Health Care Needs site.

Sources for this narrative:

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

2.  Hughes, D. (2015). In their own words: Improving the care experience of families with children with special health care needs. Lucile Packard Foundation for Children’s Health & University of California, San Francisco. Retrieved from: http://www.lpfch.org/publication/their-own-words-improving-care-experience-families-children-special-health-care-needs
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 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 CYSHCN (1, 3).

Policies and programs to promote the health and well-being of CYSHCN 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 (1, 4, 5). 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 (4, 5).
  • 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 (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 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 (3, 4).
  • 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 (6).
  • 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, as well as ensuring adequate funding for public systems serving CYSHCN (1, 2, 4, 7).
For more information, see kidsdata.org’s Research & Links section and LPFCH's program for Children with Special Health Care Needs.

Sources for this narrative:

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

2.  Bachman, S. S., et al. (2015). The care coordination conundrum and children and youth with special health care needs. Catalyst Center & Lucile Packard Foundation for Children’s Health. Retrieved from: http://www.lpfch.org/publication/care-coordination-conundrum

3.  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

4.  Association of Maternal and Child Health Programs. (2014). Developing structure and process standards for systems of care serving children and youth with special health care needs. Lucile Packard Foundation for Children’s Health. Retrieved from: http://www.lpfch.org/publication/standards-systems-care-children-and-youth-special-health-care-needs

5.  Gans, D., et al. (2013). Assuring children’s access to pediatric subspecialty care in California. UCLA Center for Health Policy Research & Lucile Packard Foundation for Children’s Health. Retrieved from: http://www.lpfch.org/publication/assuring-children's-access-pediatric-subspecialty-care-california

6.  American Occupational Therapy Association. (2015). Occupational therapy’s role in mental health promotion, prevention, and intervention with children and youth: Inclusion of children with disabilities. Retrieved from: https://www.aota.org/~/media/Corporate/Files/Practice/Children/Inclusion-of-Children-With-Disabilities-20150128.PDF

7.  Schumacher, K. (2015). Children’s health programs in California: Promoting a lifetime of health and well-being. California Budget and Policy Center & Lucile Packard Foundation for Children’s Health. Retrieved from: http://calbudgetcenter.org/resources/childrens-health-programs-in-california-promoting-a-lifetime-of-health-and-well-being
How Children Are Faring
In 2009-2010, 84% of children with special health care needs (CSHCN) in California did not receive care that met federal minimum quality standards. Also nearly half (47%) of the state's CSHCN did not receive effective care coordination. CSHCN with more complex health needs, who may need more help coordinating services, were less likely to get help with care coordination than CSHCN with less complex needs (46% vs. 70%, respectively).

In addition, according to 2011-2012 estimates, less than 36% of the state's CSHCN receive care within a medical home—a basic level of care that is ongoing, comprehensive, coordinated, and family-centered—with estimates for some counties as low as 30%. CSHCN with private health insurance were more likely to receive care within a medical home (47%) than those with public insurance (25%) in 2009-2010.

California CSHCN are less likely to have families who feel engaged in shared decision-making with health care providers than CSHCN in other states (62% vs. 71% in 2009-2010).*
Access to family-centered care—a fundamental part of quality care—is a challenge for CSHCN who have more complex needs or who are low income, of color, or publicly insured. For example, 52% of African American/black CSHCN and 59% of Hispanic/Latino CSHCN received family-centered care in 2009-2010, compared to 70% of white CSHCN in California.

* Child and Adolescent Health Measurement Initiative. (2013). Children with special health care needs in California: A profile of key issues. Lucile Packard Foundation for Children’s Health.