Usual Source of Health Care Among Children with Special Health Care Needs, by Income Level (California Only)

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Learn More About Access to Services for Children with Special Health Care Needs

Measures of Access to Services for Children with Special Health Care Needs on Kidsdata.org
Children with special health care needs (CSHCN) 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 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-based services, early intervention, special education services, and transition services to adulthood
These data come from the National Survey of Children with Special Health Care Needs and the National Survey of Children's Health, which are conducted through telephone interviews with parents. Depending on the indicator, data are available for California, the U.S., all states other than California (including the District of Columbia), and/or geographies with at least 70,000 residents (as local area synthetic estimates based on American Community Survey data from the U.S. Census Bureau).
Access to Services for Children with Special Health Care Needs
Asthma
Bullying and Harassment at School
Characteristics of Children with Special Needs
Insurance Coverage for Children with Special Health Care Needs
Impact of Special Health Care Needs on Children & Families
Quality of Care for Children with Special Health Care Needs
Dental Care
Health Care
Hospitalizations
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).
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
How Children Are Faring
In 2009-10, 26% of children with special health care needs (CSHCN) in California had unmet medical care needs and 35% had difficulty accessing community-based services. In addition, 34% of these children in California had difficulty getting needed referrals to specialty care, which was significantly higher than the average for other states (22%).* However, the vast majority of California's CSHCN had a preventive medical visit in the past year (88%) and a usual source of health care (89%) in 2009-10. Regarding mental health care, almost 40% of CSHCN in California did not receive needed mental health services, according to 2011-12 data.

CSHCN with more complex health 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, just 30% of youth with more complex special health care needs in California received the services needed to support their transition to the adult health care system, compared to 49% of youth with less complex health needs in 2009-10.
* 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.
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 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.  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.  The American Occupational Therapy Association. (2015). Occupational therapy’s role in mental health promotion, prevention, & intervention with children & youth: Inclusion of children with disabilities. Retrieved from: https://www.aota.org/~/media/Corporate/Files/Practice/Children/Inclusion-of-Children-With-Disabilities.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
Websites with Related Information
Key Reports and Research
County/Regional Reports
More Data Sources For Access to Services for Children with Special Health Care Needs