Time Spent by Families Providing Care at Home for Children with Special Health Care Needs (California & U.S. Only)

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Learn More About Impacts of Special Health Care Needs on Children and Families

Measures of Impacts of Special Health Care Needs on Children and Families on Kidsdata.org
Children with special health care needs (CSHCN) have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and require health and related services of a type or amount beyond that required by children generally. On kidsdata.org, indicators related to the impacts of special health care needs on children and families include difficulties faced by CSHCN in and out of school, hospital and emergency room use, and impacts on families’ time, employment, finances, and parenting.
These measures come from the National Survey of Children's Health, in which data are collected from interviews with parents. Estimates are available for California and the U.S.
Impacts of Special Health Care Needs on Children and Families
Asthma
Bullying and Harassment at School
Characteristics of Children with Special Needs
Student Demographics
Access to Services for Children with Special Needs
Children's Emotional Health
Cancer
Quality of Care for Children with Special Health Care Needs
School Attendance and Discipline
Health Care
Why This Topic Is Important
At least 1.4 million California children, and 15 million children nationwide, have or are at increased risk for a chronic health condition—physical, developmental, mental, or behavioral—and require care and related services of a type or amount beyond that required by children generally (1). As advances in technology and medicine continue to improve and extend the lives of children with special health care needs (CSHCN), these numbers are expected to grow (2). Over the next decade, for instance, it is estimated that the number of children with medically complex conditions will double (3).

When compared with children who do not have special health care needs, CSHCN are more likely to be limited in their ability to function and participate in daily activities, and to experience social, academic, and other life challenges that can complicate their medical care (2, 4). As a result, CSHCN often rely on a range of services from multiple sectors, and their parents and family members often have more caregiving responsibilities and experience more stress and difficulties with employment and finances when compared with other families (4, 5). In order to care for their children, parents of CSHCN may need to cut back their work hours or give up a job which provides access to health insurance and income to pay medical bills (4, 5). National estimates show that families of CSHCN provide approximately 1.5 billion hours of health care at home each year, with lost wages for these caregivers representing nearly $18 billion (6). Poverty is more common among these families, as well, and parents of CSHCN generally fare worse than other parents on measures of physical and mental health (6, 7).
Obtaining timely, appropriate, and affordable care is a major problem for many CSHCN families (4). Statewide and nationally, around 9 in 10 CSHCN do not receive care in a well-functioning system of services—one meeting federal standards for receipt of care within a medical home, preventive services, adequate health insurance, access to needed care, and family engagement (8). Major barriers to care, especially in California, include a fragmented system of services and an inadequate, shrinking workforce of pediatric subspecialists (2, 3, 4). Beyond service system barriers, social factors and practices—such as poverty and discrimination (e.g., on the basis of race/ethnicity or ability)—influence access to care, and, as a result, health outcomes. For example, CSHCN of color and those in low-income families are more likely to have unmet health needs and limited access to high-quality care when compared with their more affluent and white peers (8). Unmet needs among caregivers of CSHCN also are common, and similarly disparate (4, 5).

For more information, see kidsdata.org’s Research & Links section or visit Lucile Packard Foundation for Children's Health.

Sources for this narrative:

1.  Data Resource Center for Child and Adolescent Health. (n.d.). 2023 National Survey of Children's Health data query: Does this child have special health care needs (CSHCN) based on the CSHCN Screener? Child and Adolescent Health Measurement Initiative & U.S. Department of Health and Human Services. Retrieved from: https://www.childhealthdata.org/browse/survey/results?q=11473&r=6&r2=1

2.  National Academies of Sciences, Engineering, and Medicine. (2023). The future pediatric subspecialty physician workforce: Meeting the needs of infants, children, and adolescents. National Academies Press. Retrieved from: https://nap.nationalacademies.org/catalog/27207/the-future-pediatric-subspecialty-physician-workforce-meeting-the-needs-of

3.  Kelly, E., & Layton, K. (2023). California's children need access to pediatric subspecialists. Children's Specialty Care Coalition. Retrieved from: https://lpfch.org/resource/californias-children-need-access-to-pediatric-subspecialists

4.  Brown, T. W., et al. (Eds.). (2022). Blueprint for Change: A national framework for a system of services for children and youth with special health care needs. Pediatrics, 149(Suppl. 7). Retrieved from: https://publications.aap.org/pediatrics/issue/149/Supplement%207

5.  Sellmaier, C. (2022). Physical and mental health of mothers and fathers caring for children with special health care needs: The influence of community resources. Journal of Family Issues, 43(11), 2815-2840. Retrieved from: https://journals.sagepub.com/doi/10.1177/0192513X211035580

6.  Hoover, C. G., et al. (2022). Understanding caregiving and caregivers: Supporting children and youth with special health care needs at home. Academic Pediatrics, 22(Suppl. 2), S14-S21. Retrieved from: https://www.academicpedsjnl.net/article/S1876-2859(21)00529-5/fulltext

7.  Scheid, A., & Sahai, S. (2024). Psychological care of the family of children with medical complexities. Pediatric Annals, 53(3), e93-e98. Retrieved from: https://journals.healio.com/doi/10.3928/19382359-20240109-03

8.  Data Resource Center for Child and Adolescent Health. (n.d.). 2022-2023 National Survey of Children's Health data query: Percent of children with special health care needs (CSHCN), ages 0 through 17, who receive care in a well-functioning system. Child and Adolescent Health Measurement Initiative & U.S. Department of Health and Human Services. Retrieved from: https://www.childhealthdata.org/browse/survey/results?q=11339&r=6&r2=1
How Children Are Faring
According to 2023 data, more than 60% of children ages 0-17 with special health care needs (CSHCN) in California and the U.S. have health conditions that moderately or consistently affect their ability to do daily activities that other children their age do. In California, an estimated 19% of CSHCN missed at least 11 school days in the previous year due to illness or injury—more than five times the rate for their peers without special health care needs. The percentage of CHSCN who had ever repeated a grade in school—statewide (6%) and nationally (9%)—also was more than double that for their peers.

In 2023, more than 25% of California CSHCN visited an emergency room (ER) in the previous year, and more than 5% had at least one overnight hospital stay. In California and across the U.S., hospital and ER use was more common among CSHCN with public health insurance than those with private coverage. While out-of-pocket health care costs were higher than $1,000 for 22% of California CSHCN overall, more than 95% of CSHCN in California with public insurance exclusively had out-of-pocket expenses of less than $500 in the previous year.

Among California CSHCN who need to receive therapies, medications, or other health care at home, more than 1 in 4 have families who spend at least 11 hours each week providing that care. In 2023, 23% of CSHCN in California had parents or other family members who left a job, took a leave of absence, or cut back their work hours in the previous year because of the child's health, and 18% had someone in their family who avoided changing jobs in the previous year due to concerns about maintaining health insurance coverage.

More than 1 in 5 California CSHCN had parents who usually or always felt aggravation from parenting in the previous month, compared with around 1 in 50 California children without special health care needs, according to 2023 estimates.
Policy Implications
Children with special health care needs (CSHCN), like all young people, need ready access to appropriate physical and mental health care, educational opportunities, and, sometimes, social services and other support (1). CSHCN, especially those with more complex conditions, frequently encounter obstacles to obtaining timely access to pediatric subspecialty providers and 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, limitations in their ability to do common childhood activities, and other life challenges (1). Their families, too, often have significant caregiving responsibilities and experience economic, employment, and personal stress in excess of families without CSHCN (1, 3).

The impacts of special health care needs can be substantial and far-reaching for both children and their caregivers, and unmet needs are a widely recognized problem (1, 3, 4). Difficulties with accessing quality health care and other services are especially pronounced for CSHCH of color and low-income families—for example, low-income parents of CSHCN more often report poor mental health than other parents, and CSHCN of color and those in poverty more frequently face activity limitations due to chronic conditions (1, 3, 4).

Achieving equity in access to care and outcomes for CSHCN and their families requires addressing the root causes of disparities, such as poverty and discrimination, and overcoming cross-sector challenges involving resources and financing, system coordination, workforce development and training, and political will (1). Systems serving CSHCN families can be strengthened through comprehensive, equity-centered programs and policies at the local, state, and national levels.

Policy, system, and practice options to promote the well being of CSHCN and their families should address:
  • Equity-focused systems change: Leaders recommend a paradigm shift towards systems that are simplified, centered on equity, proactive instead of reactive, and based on needs rather than diagnoses, eligibility thresholds, insurance authorization, or other factors. Removing administrative barriers, aligning eligibility processes, and supporting families in navigating services can streamline access to care and prioritize the needs of CSHCN and their families (1, 2).
  • Comprehensive and consistent health care coverage: CSHCN and their families need comprehensive, affordable insurance that provides adequate coverage for medical and mental health services and equipment, access to specialty care providers, care coordination and integration, and long-term supportive services. These children also need consistent coverage, without gaps that can cause delays in needed care. Appropriate reimbursement, especially by Medicaid (Medi-Cal), is critical to ensuring that high-quality services are available from an adequate network of providers (1, 2, 3, 6).
  • Early and frequent screening: Regular 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, highlighting the urgency for equitable access to early identification and intervention services (7).
  • Family-centered care: CSHCN and their families tend to have better outcomes when they receive family-centered care—from providers who engage with families, include them as partners in decision-making, and prioritize their needs, values, and goals. Concerted efforts are needed to address family-centered care disparities for CSHCN, particularly by socioeconomic status (1, 8).
  • High quality, well coordinated, integrated services: CSHCN families benefit from evidence-based services provided in the context of a medical home, which assures high quality, well-coordinated care, including integrated physical, oral, mental, and behavioral health care and collaboration across community, school, and home-based support services (1, 2).
  • Tailored support for caregivers: Community support systems that integrate mental health care, peer connections, employment and economic assistance, responsive child care and school services, and other resources can support caregiver well being. Leaders also can promote policies—such as paid family and medical leave—that address parental needs (3, 4, 5, 9).
  • Educational and recreational inclusion: Providing all CSHCN with access to high-quality support services at school and ensuring their full inclusion with other children in general education settings is critical to their development and can maximize their social and academic outcomes. CSHCN also need access to appropriate physical activity and recreation opportunities. School-level resources, cross-sector collaboration, discrimination, and other barriers to inclusion should be addressed (9, 10, 11).
  • Adequate subspecialty workforce: CSHCN with complex conditions need access to pediatric subspecialty providers who are able to focus on specific health care needs. The shortage of pediatric subspecialists warrants revamped recruitment and retention efforts, along with increased collaboration between specialty and primary care providers (2, 6).
  • Cultural responsiveness: A health care workforce that reflects the cultural and linguistic diversity of CSHCN could help reduce disparities and improve health outcomes. All sectors serving CSHCN, including medical subspecialties, should have a diverse workforce trained on culturally responsive practices (1, 2, 5).
  • Continuity across service sectors: CSHCN often must move across service sectors, such as from the pediatric to adult health care system as they age. Continuity and support across systems and sectors should be prioritized, along with minimizing new hurdles to accessing services (1).
  • Robust investments in financing reform: A complicated web of service systems with dueling eligibility criteria and confusing payment policies can result in delayed or denied services for CSHCN and financial hardship for families. Current financing systems disincentivize equity, promote fragmentation, and impede reform. Public investments are needed to transform financing models in ways that support integrated, comprehensive care, minimize hardship for families, and address structural discrimination. This includes adequate state and federal funding for public systems serving CSHCN (1, 2, 6).
For more information, see kidsdata.org’s Research & Links section or visit Lucile Packard Foundation for Children's Health.

Sources for this narrative:

1.  Brown, T. W., et al. (Eds.). (2022). Blueprint for Change: A national framework for a system of services for children and youth with special health care needs. Pediatrics, 149(Suppl. 7). Retrieved from: https://publications.aap.org/pediatrics/issue/149/Supplement%207

2.  National Academies of Sciences, Engineering, and Medicine. (2023). The future pediatric subspecialty physician workforce: Meeting the needs of infants, children, and adolescents. National Academies Press. Retrieved from: https://nap.nationalacademies.org/catalog/27207/the-future-pediatric-subspecialty-physician-workforce-meeting-the-needs-of

3.  Sellmaier, C. (2022). Physical and mental health of mothers and fathers caring for children with special health care needs: The influence of community resources. Journal of Family Issues, 43(11), 2815-2840. Retrieved from: https://journals.sagepub.com/doi/10.1177/0192513X211035580

4.  Hoover, C. G., et al. (2022). Understanding caregiving and caregivers: Supporting children and youth with special health care needs at home. Academic Pediatrics, 22(Suppl. 2), S14-S21. Retrieved from: https://www.academicpedsjnl.net/article/S1876-2859(21)00529-5/fulltext

5.  Scheid, A., & Sahai, S. (2024). Psychological care of the family of children with medical complexities. Pediatric Annals, 53(3), e93-e98. Retrieved from: https://journals.healio.com/doi/10.3928/19382359-20240109-03

6.  Kelly, E., & Layton, K. (2023). California's children need access to pediatric subspecialists. Children's Specialty Care Coalition. Retrieved from: https://lpfch.org/resource/californias-children-need-access-to-pediatric-subspecialists

7.  Meurer, J., et al. (2022). Improving child development screening: Implications for professional practice and patient equity. Journal of Primary Care and Community Health, 13. Retrieved from: https://journals.sagepub.com/doi/full/10.1177/21501319211062676

8.  Morgan, P. L., et al. (2022). Disparities in family-centered care among U.S. children and youth with special healthcare needs. Journal of Pediatrics, 253, 297-303.e6. Retrieved from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10635424

9.  National Academies of Sciences, Engineering, and Medicine. (2022). Supporting children with disabilities: Lessons from the pandemic. National Academies Press. Retrieved from: https://nap.nationalacademies.org/catalog/26702/supporting-children-with-disabilities-lessons-from-the-pandemic-proceedings-of

10.  National Academies of Sciences, Engineering, and Medicine. (2023). Closing the opportunity gap for young children. National Academies Press. Retrieved from: https://nap.nationalacademies.org/catalog/26743/closing-the-opportunity-gap-for-young-children

11.  Carbone, P. S., et al. (2021). Promoting the participation of children and adolescents with disabilities in sports, recreation, and physical activity. Pediatrics, 148(6), e2021054664. Retrieved from: https://publications.aap.org/pediatrics/article/148/6/e2021054664/183444/Promoting-the-Participation-of-Children-and

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