Impact of Child's Special Health Care Needs on Parental Employment, by Race/Ethnicity (California & U.S. Only)
Download & Other Tools
Download & Other Tools
- Definition: Percentage of children ages 0-17 with special health care needs whose parents stopped or cut back on work to care for their child, by race/ethnicity.
- Data Source: Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health, National Survey of Children with Special Health Care Needs (Dec. 2012).
- Footnote: 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. The "Other" category includes American Indian/Alaska Native, Asian, and Native Hawaiian/Pacific Islander. These groups are not presented separately due to small sample sizes. In 2009-10, "Other" was expanded to include multiracial children, too; thus, use caution in comparing the “Other” group over time.
Learn More About Impact of Special Health Care Needs on Children & Families
- Measures of Impact of Special Health Care Needs on Children & Families 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 on the impact of special health care needs include difficulties faced by CSHCN, effects on their school, and impacts on parental stress, time, finances, and employment.
See kidsdata.org's CSHCN category for the full list of indicators related to CSHCN, including data on demographics, access to care, quality of care, 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, 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). -
- Impact of Special Health Care Needs on Children & Families
-
- Children with Special Health Care Needs Whose Conditions Caused Family Financial Problems (California & Other States Only)
- Children with Special Health Care Needs Whose Conditions Consistently and/or Greatly Affect Their Daily Activities (California & U.S. Only)
- Children with Special Health Care Needs Whose Families Spend 11 Hours or More a Week on the Child’s Health Care (California & U.S. Only)
- Children with Special Health Care Needs Whose Family Member(s) Avoided Changing Jobs Due to Health Insurance (California & U.S. Only)
- Children Whose Parents Experienced Stress Due to Parenting, by Child's Special Needs Status (California & U.S. Only)
- Impact of Child's Special Health Care Needs on Parental Employment (California & U.S. Only)
- Out-of-Pocket Expenses for Children with Special Health Care Needs, by Adequacy of Insurance (California & U.S. Only)
- Overnight Hospital Stays Among Children with Special Health Care Needs (California Only)
- Repeating a Grade in School, by Special Needs Status (California & U.S. Only)
- School Days Missed Among Children with Special Health Care Needs (California & U.S. Only)
- Asthma
- Bullying and Harassment at School
- Characteristics of Children with Special Needs
-
- Active California Children's Services (CCS) Enrollees, by Age Group
- Children with Special Health Care Needs (California & U.S. Only)
- Prevalence of Special Health Care Needs Among Children (Regions of 70,000 Residents or More)
- Children with Four or More Functional Difficulties, by Type of Insurance (California & U.S. Only)
- Children with Major Disabilities, by City, School District and County (Regions of 65,000 Residents or More)
- Children Who Are Overweight or Obese, by Special Needs Status (California & U.S. Only)
- Insured/Uninsured Children Who Have Major Disabilities, by City, School District and County (Regions of 65,000 Residents or More)
- Insured/Uninsured Children Who Have Special Health Care Needs, by Type of Insurance (California & U.S. Only)
- Poverty Among Children with Special Health Care Needs, by Race/Ethnicity (California & U.S. Only)
- Special Education Enrollment
- Children with Special Health Care Needs with One or More Adverse Experiences
- Children with Special Health Care Needs Who Are Usually/Always Resilient
- Emotional or Behavioral Difficulties Among Children with Special Health Care Needs (California & U.S. Only)
- Access to Services for Children with Special Needs
-
- Children with Special Health Care Needs Who Need Five or More Services (California & U.S. Only)
- Children with Special Health Care Needs Who Had a Preventive Medical Visit in the Last Year (California & U.S. Only)
- Difficulty Accessing Community-Based Services for Children with Special Health Care Needs (California & U.S. Only)
- Early Intervention for Children with Special Health Care Needs (California & U.S. Only)
- Receipt of Mental Health Services Among Children with Special Health Care Needs Who Need Treatment or Counseling (California & U.S. Only)
- Referrals to Specialty Care for Children with Special Health Care Needs (California & U.S. Only)
- Special Education Participation by Children with Special Health Care Needs (California & U.S. Only)
- Unmet Needs for Health Services Among Children with Special Health Care Needs (California & U.S. Only)
- Unmet Needs for Preventive Dental Services Among Children with Special Health Care Needs (California & U.S. Only)
- Usual Source of Health Care Among Children with Special Health Care Needs (California & U.S. Only)
- Youth with Special Health Care Needs Who Receive Needed Services for the Transition to Adulthood (California & U.S. Only)
- Insurance Coverage for Children with Special Health Care Needs
-
- Insurance Coverage for Children with Special Health Care Needs, by Insurance Status (California & Other States Only)
- Insurance Coverage for Children with Special Health Care Needs (Regions of 70,000 Residents or More)
- Consistency of Insurance Coverage, by Special Needs Status (California & U.S. Only)
- Adequacy of Insurance Coverage Among Insured Children, by Special Needs Status (California & U.S. Only)
- Adequacy of Insurance Coverage Among Children with Special Health Care Needs (Regions of 70,000 Residents or More)
- Quality of Care for Children with Special Health Care Needs
-
- Children with Special Health Care Needs Who Receive Care that Meets Federal Minimum Quality Standards (California & U.S. Only)
- Receipt of Effective Care Coordination for Children with Special Health Care Needs (California & Other States Only)
- Receipt of Family-Centered Health Care for Children with Special Health Care Needs (California & U.S. Only)
- Children with Special Health Care Needs Whose Families Feel Engaged in Shared Decision-Making with Providers (California & U.S. Only)
- Receipt of Care Within a Medical Home for Children with Special Health Care Needs (California & U.S. Only)
- Receipt of Care Within a Medical Home for Children with Special Health Care Needs (Regions of 70,000 Residents or More)
- Hospitalizations
- Why This Topic Is Important
-
In California there are more than one million children and youth whose needs for health care services are greater or more complex than children generally. Their ongoing health problems—physical, behavioral, or developmental—can affect their ability to function and participate in important educational and social activities (1). 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). For example, the demands on families of CSHCN may require that parents cut down their work hours or give up a job, at the same time that they face higher than average out-of-pocket health care costs (1). Having a child with special needs also is a significant time commitment. Families of CSHCN may spend large amounts of time providing care, learning about their child’s condition and available services, and/or coordinating their child’s care (1).
CSHCN account for more than 40% of all health care costs among children nationwide, despite making up less than 20% 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
-
Nearly 30% of children with special health care needs (CSHCN) in California have conditions that impact their daily lives, according to 2009-2010 data. In addition, in 2011-2012, a larger proportion of CSHCN had parents who experienced stress from parenting (28%) compared with other children in California (12%) and compared with children with and without special health care needs in the U.S. (23% and 9%, respectively). Across California counties with data, 22% to 33% of CSHCN had parents who experienced parental stress.
In 2009-2010, almost one-quarter of California's CSHCN (24%) had conditions that caused family financial problems. About 16% of CSHCN had families that spent 11+ hours per week providing and/or coordinating care for the child, an increase from 9% in 2005-2006.
Some data show disparities by complexity of health needs, poverty level, insurance type, and race/ethnicity. For example, 29% of CSHCN in California have conditions that cause their families to cut back or stop working, according to 2009-2010 estimates. However, among CSHCN who have conditions that require more than just prescription medication, 41% have families that cut back or stop working. Furthermore, 46% of CSHCN in families at the lowest poverty level (0-99%) and 45% of CSHCN using public insurance have families that cut back or stop working. These rates also differ by race/ethnicity—20% of white, 26% of African American/black, and 36% of Hispanic/Latino CSHCN have conditions that cause their families to cut back or stop working.** 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 with special health care needs (CSHCN), like all young people, need ready access to appropriate medical care, educational opportunities, and, sometimes, social services. CSHCN, 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 CSHCN (1, 3).
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 (1, 4, 5). These children also need 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: CSHCN 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 children’s lives 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 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 (1, 4).
- 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 (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 - Research & Links
-
- Websites with Related Information
-
- Association of Maternal and Child Health Programs (AMCHP)
- California Children's Services Redesign, UCLA Center for Health Policy Research
- Catalyst Center, Boston University Center for Advancing Health Policy and Practice
- Center for Parent Information and Resources, Statewide Parent Advocacy Network (SPAN)
- Center for Studying Disability Policy, Mathematica Policy Research
- Children and Youth with Special Health Care Needs: Professional Resource Guide, 2014, Maternal and Child Health Digital Library
- Children's Regional Integrated Service System (CRISS)
- Disability Rights California
- Family Voices
- Got Transition: Health Care Transition Resources, National Alliance to Advance Adolescent Health
- Lucile Packard Foundation for Children's Health: Program for Children with Special Health Care Needs
- Maternal and Child Health Bureau: Children with Special Health Care Needs, U.S. Dept. of Health and Human Services, Health Resources and Services Administration
- National Academy for State Health Policy (NASHP)
- Support for Families of Children with Disabilities
- Key Reports and Research
-
- Analytic Guidance for the California Children’s Services (CCS) Program, Stanford Center for Policy, Outcomes, and Prevention
- Assuring Children’s Access to Pediatric Subspecialty Care in California, 2013, UCLA Center for Health Policy Research & Lucile Packard Foundation for Children's Health, Gans, D., et al.
- Children with Disabilities, 2012, The Future of Children
- Children with Special Health Care Needs in California: A Profile of Key Issues, 2013, Lucile Packard Foundation for Children's Health, Child and Adolescent Health Measurement Initiative
- Children with Special Health Care Needs: With Population-Based Data, Better Individual Care Plans, 2015, Pediatrics, Van Cleave, J.
- Health Care Coverage and Financing for Children with Special Health Care Needs: A Tutorial to Address Inequities, 2016, Catalyst Center, Wilson, K., et al.
- Hidden in Plain Sight: California Children Using Long-Term Care Services, 2015, Learning Partnerships & Lucile Packard Foundation for Children's Health, Brousseau, R., & MacDonald, S.
- Immigrant Families, Children with Special Health Care Needs, and the Medical Home, 2016, Pediatrics, Kan, K., et al.
- In Their Own Words: Improving the Care Experience of Families with Children with Special Health Care Needs, 2015, Lucile Packard Foundation for Children’s Health & University of California, San Francisco, Hughes, D.
- Patient- and Family-Centered Care Coordination: A Framework for Integrating Care for Children and Youth Across Multiple Systems, 2014, Pediatrics, American Academy of Pediatrics, Council on Children with Disabilities & Medical Home Implementation Project Advisory Committee
- Standards for Systems of Care for Children and Youth with Special Health Care Needs, 2017, Lucile Packard Foundation for Children's Health, Association of Maternal and Child Health Programs & National Academy for State Health Policy
- The 2020 Federal Youth Transition Plan: A Federal Interagency Strategy, 2015, Federal Partners in Transition Workgroup
- The Care Coordination Conundrum and Children and Youth with Special Health Care Needs, 2015, Catalyst Center & Lucile Packard Foundation for Children’s Health, Bachman, S. S., et al.
- More Data Sources For Impact of Special Health Care Needs on Children & Families
-
- Data Resource Center for Child and Adolescent Health, Child and Adolescent Health Measurement Initiative
Receive Kidsdata News
Regular emails featuring notable data findings and new features. Visit our Kidsdata News archive for examples.