Examining the Prevalence of Underinsurance in Children with Special Health Care Needs

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JAMA study investigates whether physical or behavioral healthcare needs are associated with the risk of underinsurance across household income levels.

In a recently published study by the JAMA Network, researchers aimed to discover the prevalence of underinsurance among children with special health care needs (CSHCN) in the United States and assess variations based on the complexity of medical conditions and household income levels. In most cases, underinsured children are associated with lower reported quality of care, forgone care, and unmet health needs. Despite a record number of children being insured in the present day, the study credits this as coinciding with a rise in the prevalence of pediatric underinsurance.1

Conducted from 2016 to 2021, the study included 218,621 children aged 0 to 17 years that weren’t institutions. Findings included:

  • Prevalence of Underinsurance: Rates were particularly high among children with complex physical conditions and limitations or mental/behavioral conditions with limitations.
  • Income Disparities: Underinsurance was most prevalent among families with incomes between 200% and 399% of the federal poverty level, with middle-income households faced the highest risk of underinsurance.
  • Association with Medical Complexity: The odds of being underinsured increased with the complexity of a child’s health care needs, especially for those with functional limitations. Children with complex physical conditions and limitations, as well as those with mental/behavioral conditions and limitations, faced significantly higher odds of underinsurance.
  • Implications for Middle-Income Families: The concentration of underinsurance among middle-income households highlights the difficulty faced by families who do not qualify for public health insurance but still struggle with the costs of providing necessary health care.
  • Insurance Type Impact: Children covered by private insurance, especially those in middle-income households, were more likely to be underinsured than those with public insurance coverage.
  • Policy Implications: The study underscores the need for policy interventions to address the unique challenges faced by families with children requiring special health care, especially those in the middle-income bracket. There is a call for ongoing evaluation and modification of public health insurance programs to meet the evolving needs of this population.1

The issue of underinsurance goes beyond children with special health care needs. According to a Fior Reports article written by Becca Roberts, the number of uninsured people in the US remains significantly high. Citing a Commonwealth Fund report released in 2023, Roberts points out that 43% of working-age adults were underinsured in 2022, including the uninsured, those that had a gap in coverage, or those with plans that didn’t provide sufficient access to healthcare. She further explains that many people who technically have health insurance still incur very high out-of-pocket costs, including for prescription medications.2

“So, tens of millions of Americans find themselves in a precarious situation all year round. The insecurity of a healthcare system in which patchy care is so widespread means that too many people have the proverbial sword of Damocles hanging over their heads,” said Roberts. “Nearly one in five American households has medical debt, meaning they were unable to pay a medical bill at the time of treatment. For households with medical debt, the average amount owed is about $2,000. Approximately twice as many households without adequate insurance coverage have medical debt as households with insurance coverage. And according to a recent study published in the American Journal of Public Health, about 530,000 people report going bankrupt every year because of medical bills.”

The JAMA study didn’t come without limitations. First, its categorization reflected the health consequences and medical complexity of a child’s condition rather than their diagnosis. Second, measures of health insurance adequacy were based on the perceptions of parents rather than objective characteristics.1

“In this cross-sectional study, we found that during a period of rising out-of-pocket costs for many families enrolled in commercial insurance, the likelihood of underinsurance among CSHCN increased with the severity of children’s health care needs,” concluded the study authors.” Underinsurance was more prevalent among CSHCN with complex physical conditions and limitations—particularly so for middle-income households—as well as among children with mental or behavioral conditions and limitations who have unique and challenging health care needs. As health care and insurance costs continue to rise, ongoing evaluation will be necessary so that state and federal health authorities can modify public health insurance program design and eligibility to meet the needs of CSHCN best.”


1. Underinsurance Among Children With Special Health Care Needs in the United States. JAMA Network. December 26, 2023. Accessed January 3, 2023. https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2813141

2. Far Too Many People Are Underinsured In The US Healthcare System. Fior Reports. January 1, 2024. Accessed January 3, 2024. https://fiorreports.com/far-too-many-people-are-underinsured-in-the-us-healthcare-system/

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