Prevalence of Special Health Care Needs Among Foster Youth in a Nationally Representative Survey

Children in foster care have the highest rates of chronic conditions of any child population.¹ While the National Survey of Child and Adolescent Well-Being remains the gold standard for data on special health care needs (SCHNs) of children in foster care, the data do not permit comparisons between children in foster care and other types of care.² We address this gap by describing current rates of SHCNs and specific mental health and developmental conditions for children across a range of caregiving circumstances.

We combined 2 years of parent-proxy survey data from the 2016-2017 National Survey of Children’s Health (N = 71 811 households).³ Weighted estimates are representative of children who are noninstitutionalized and aged 0 to 17 years old in the United States. The mean overall response rate was 39.1%. Because the study data are publicly available from the US Census Bureau and deidentified, the study is not considered human subjects research and does not require institutional review board approval.

For the first time in 2016, the National Survey of Children’s Health provided a public-use variable that identifies responses from foster parents as a category of caregivers. We examined 4 mutually exclusive caregiver types: foster parents; biological or adoptive parents; other, related caregivers (ie, grandparents, aunts or uncles, other relatives); or other, nonrelated caregivers (ie, stepparents, other nonrelatives). While living with foster parents implies court-ordered separation from birth parents, living with other, related or nonrelated caregivers may or may not involve the courts. To assess health, caregivers were asked whether a physician, health care professional, or educator ever told them that their child had a specific condition, and if so whether the condition was currently present. We examined the prevalence of 9 current health conditions and overall SHCNs based on a 5-question screening instrument.

We fit logistic regression models, controlling for demographics, health insurance adequacy, and household characteristics to estimate the mean marginal effect of caregiver type. All analyses used Stata version 14.2 (StataCorp) and accounted for the complex survey design; analyses are presented as population-weighted values. All P values were 2 tailed, with significance set at P < .05. Data were analyzed from November 2018 to April 2019.

Overall, 227 476 of more than 70 million children (0.4%) had foster caregivers (Table 1). Nearly one-half of the children (44% [95% CI, 31.2%-58.5%]) living with foster parents met criteria for a SHCN. Children living with foster parents, compared with children living with biological or adoptive parents, had higher rates of current anxiety (16.0% [95% CI, 8.5%-28.0%] vs 5.9% [95% CI, 5.6%-6.3%]), behavioral disorders (20.5% [95% CI, 13.2%-30.5%] vs 5.7% [95% CI, 5.3%-6.1%]), developmental delays (19.3% [95% CI, 11.4%-30.9%] vs 4.6% [95% CI, 4.3%-5.0%]), and speech/language disorders (17.8% [95% CI, 9.8%-30.2%] vs 4.8% [95% CI, 4.4%-5.2%]). Caregiver type was associated with the prevalence of all health conditions, except for autism spectrum disorder and intellectual disability or Down syndrome.

Living with a foster parent vs a biological or adoptive parent was associated with significant positive mean marginal effect sizes in the probability of having a SHCN (27.5 [95% CI, 12.4-42.6]; P < .001), anxiety (15.7 [95% CI, 4.6-26.8]; P < .001), behavioral disorder (14.6 [95% CI, 4.2-25.0]), developmental delay (12.8 [95% CI, 3.5-22.0]), and/or speech/language disorder (10.9 [95% CI, 1.0-20.8]) (Table 2). Living with a related caregiver vs a biological or adoptive parent was associated with a probability increased by 3.1 to 3.9 percentage points of a current learning disability, attention-deficit/hyperactivity disorder, and depression. These effect sizes were comparable in magnitude with children living with foster parents.

Living in foster care is associated with significantly higher probabilities of SHCNs and specific mental health and developmental conditions. Overall rates of SHCNs are higher than those measured in National Survey of Child and Adolescent Well-Being I (35%) and support the findings from more recent studies that the prevalence of SHCN in children living in foster care remain substantial.^4,5

The American Academy of Pediatrics recognizes the vital role of pediatricians serving children when permanent caregivers are absent. This is especially important for pediatricians serving children living with nonbiological, nonadoptive caregivers outside of the foster care system because of a lack of formal casework services. Ongoing monitoring of the prevalence of SHCNs among children living with foster parents and related caregivers, now possible with the newly redesigned National Survey of Children’s Health, is essential to illuminate the need for new practice supports and cross-system strategies to address the needs of this vulnerable population.⁶

Acceptance Date: November 13, 2019.

Corresponding Author: Lucy A. Bilaver, PhD, Department of Pediatrics, Northwestern University Feinberg School of Medicine, 633 N St Clair, 20th Floor, Chicago, IL 60611 (l-bilaver@northwestern.edu).

Published Online: May 11, 2020. doi:10.1001/jamapediatrics.2020.0298

Author Contributions: Dr Bilaver had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Concept and design: All authors.

Acquisition, analysis, or interpretation of data: Bilaver.

Drafting of the manuscript: Bilaver.

Critical revision of the manuscript for important intellectual content: All authors.

Statistical analysis: Bilaver.

Supervision: Davis.

Conflict of Interest Disclosures: Dr Bilaver reports a grant from the Alliance for Research in Chicagoland Communities at Northwestern University outside the submitted work. No other disclosures were reported.