Children with Special Health Care Needs Whose Families Feel Engaged in Shared Decision-Making with Providers
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Learn More About Quality of Care for Children with Special Health Care Needs (State-Level Data)

Measures of Quality of Care for Children with Special Health Care Needs (State-Level Data) on Kidsdata.org
Children with special health care needs 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 related to quality of health care for CSHCN include the following data, which are available only at the state and national levels:
See www.kidsdata.org/cshcn for the full list of indicators related to CSHCN, including data on demographics, the impact of chronic conditions, access to services, 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. The surveys are conducted through telephone interviews with parents.
Quality of Care for Children with Special Health Care Needs (State-Level Data)
Bullying and Harassment at School
Demographics of Children with Special Needs
Access to Services for Children with Special Health Care Needs (State-Level Data)
Insurance Coverage for Children with Special Health Care Needs (State-Level Data)
Impact of Special Health Care Needs on Children & Families (State-Level Data)
Pupil Support Service Personnel
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 activities important to their education and social participation. In some cases their health problem can shorten their lives (1). Medical care of children with special health care needs is often complicated by the co-occurrence of social, emotional, and academic problems (1, 2). Because of the higher caregiving burdens of families of children with special needs, families tend to experience more difficulties in the areas of employment, child care, and parental stress than families of other children (1, 2). 

By definition, children with special health care needs require more health care services than other children, and they account for more than 40% of all health care costs among children nationwide despite making up only 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 children with special health care needs do not receive one or more basic aspects of quality health care, in California and nationally (1). Improving 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 health and well being, their development, and their families’ experiences.
For more information on this topic, see kidsdata.org’s Research & Links section and our Program for Children with Special Health Care Needs site.

Sources for this narrative: 

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

2.  Quach, J., et al. (2015). Trajectories and outcomes among children with special health care needs. Pediatrics135(4), e842-e850. Retrieved from: http://pediatrics.aappublications.org/content/early/2015/03/11/peds.2014-2431.
How Children Are Faring
In 2009-10, more than 4 in 5 children with special health care needs (CSHCN) in California did not receive care that met federal minimum quality standards. Nearly half (47.3%) of the state's CSHCN also do not receive effective care coordination. Children with more complex health needs, who arguably need the most help coordinating services, are significantly less likely to get help with care coordination than children with fewer needs (45.8% vs. 70.1%, respectively).*

In addition, in 2009-10 less than 40% of the state's CSHCN received care within a medical home—a basic level of care that is ongoing, comprehensive, coordinated, and family-centered. Children with private health insurance were much more likely to receive care within a medical home (47.0%) than children with public insurance (25.4%).
Overall, CSHCN who have more complex needs or who are low income, of color, or publicly insured are more likely than other children to have challenges accessing quality health care. For example, about 5 in 10 African American CSHCN and more than 4 in 10 Latino CSHCN did not receive family-centered care in 2009-10, compared to 3 in 10 white CSHCN in California. Family-centered care is a fundamental part of quality care that represents a minimum level of effective communication and interaction with families.

California children with special needs also are less likely to have families who feel engaged in shared decision-making with health care providers than children in other states (61.8% vs. 71.1% in 2009-10).

* Lucile Packard Foundation for Children’s Health & Child and Adolescent Health Measurement Initiative. (2013). Children with Special Health Care Needs in California: A Profile of Key Issues
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 being assured that all their care is comprehensive, coordinated, and of high quality. They also may experience difficulty attending school and participating in recreational activities. Their families may have to manage economic, social and personal burdens in excess of those of a typical family (1, 2, 3, 4).

According to research and subject experts (5), policies and programs to promote the health and well-being of children and youth with special health care needs 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. These children also need consistent coverage, without gaps that can cause delays or problems receiving critical specialty services (1). Appropriate reimbursement also is critical to maintaining an adequate provider network (6).
  • 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 (4, 7, 8).
  • 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 health care and families should be included as partners in all health care decision-making for CYSHCN (1).
  • 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 (1).
  • 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 (4).
  • 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 (6, 8), as well as ensuring adequate funding for special education services (9).
For more policy ideas, see kidsdata.org’s Research & Links section and our Program for Children with Special Health Care Needs site.

Sources for this narrative:

1.  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/

2.  Peterson, S., et al. (2007). 
Quality care for special kids; Profiles of children with chronic conditions and disabilities. Mathematica Policy Research Inc. & U.S. Health Resources and Services Administration. Retrieved from: http://www.mathematica-mpr.com/publications/PDFs/qualitycareupdate4.pdf

3.  Okumura, M. J., et al. (2009). Understanding factors associated with work loss for families caring for CSHCN. 
Pediatrics, 124(Suppl. 4), S393-S398. Retrieved from: http://pediatrics.aappublications.org/cgi/content/abstract/124/Supplement_4/S392

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

5.  Association of Maternal & Child Health Programs and Lucile Packard Foundation for Children’s Health. (2014). 
Standards for systems of care for children and youth with special health care needs. Retrieved from: http://lpfch-cshcn.org/publications/research-reports/developing-structure-and-process-standards-for-systems-of-care-serving-children-and-youth-with-special-health-care-needs/

6.  Lucile Packard Foundation for Children’s Health. (2009). 
California's service system for children and youth with special health care needs: Analysis and recommendations for a service system that works for children and families. Retrieved from: http://www.lpfch.org/californiaservicesystem/ 

7.  Gans D., et al. (2013).
 Assuring children’s access to pediatric subspecialty care in California. UCLA Center for Health Policy Research and Lucile Packard Foundation for Children’s Health. Retrieved from: http://lpfch-cshcn.org/publications/issue-briefs/assuring-childrens-access-to-pediatric-subspecialty-care-in-california/

8.  Association of Maternal & Child Health Programs and Lucile Packard Foundation for Children’s Health. (2009). 
Models of care for children and youth with special health care needs: Promising models for transforming California’s system of care. Retrieved from: http://www.lpfch.org/nationalmodels/

9.  Minow, M. L. (2001). 
Funding mechanisms in special education. National Center on Accessing the General Curriculum. Retrieved from: http://www.cast.org/publications/ncac/ncac_funding.html
Websites with Related Information
Key Reports
County/Regional Reports
More Data Sources For Quality of Care for Children with Special Health Care Needs (State-Level Data)