Abstract
This survey study uses data from the 2019-2022 National Health Interview Survey to estimate heath care–related financial hardships experienced by families of children with disabilities.
Introduction
Families of children with disabilities report more health care–related financial problems than families of children without disabilities.1 Their families are also more likely to report inadequate insurance coverage.2,3 We used the National Health Interview Survey (NHIS) to quantify the hardships of health care costs to families of children with disabilities in terms of difficulty paying their child’s medical bills, concerns about paying their child’s health care bills, and their child’s care delayed or forgone due to cost.
Methods
Data from the 2019-2022 NHIS for children aged 5 to 17 years were pooled for these analyses (eAppendix in Supplement 1). The NHIS is a nationally representative cross-sectional survey of the noninstitutionalized US population conducted by the National Center for Health Statistics.4 Information about the household’s sample child was collected via computer-assisted personal interview with a parent or guardian knowledgeable about the child’s health and disabilities, if present.5 Statistical analysis was performed from December 2024 to February 2025. Prevalence estimates and 95% CIs were calculated with survey weights applied. The χ2 test was applied to determine within-group prevalence differences, and the Cramer V was calculated for effect size estimates. The main outcome was the presence of health care–related financial hardship measured by caregiver report of difficulty paying the child’s medical bills, concerns about paying the child’s medical bills, delayed or forgone medical care due to cost and/or delayed or forgone prescriptions due to cost. Outcome estimates were adjusted for sociodemographic factors with missing data deleted. All P values were from 2-sided tests, and results were deemed statistically significant at P < .05. All analyses were conducted using R software, version 4.4.1. This secondary analysis falls under the exempt category for the University of Pittsburgh institutional review board because the data are publicly available. The study follows the AAPOR reporting guideline for survey studies.
Results
Among the 22 670 children aged 5 to 17 years in the analytic sample representing 53 586 children annually, the overall prevalence of disability among children aged 5 to 17 years was 17.4% (95% CI, 16.7%-18.1%) (Table 1). The most commonly reported disabilities were emotional or behavioral (10.8% [95% CI, 10.2%-11.3%]). Disability prevalence varied across sociodemographic characteristics, with generally weak associations (Table 1). Children with disabilities were more likely to have public insurance (adjusted odds ratio [AOR], 1.42 [95% CI, 1.26-1.60]) or a combination of private and public insurance (AOR, 2.79 [95% CI, 2.10-3.71]) than their peers without disabilities (Table 2). Families of children with disabilities were almost twice as likely to experience any of 6 financial hardships than families of children without disabilities (22.3% [95% CI, 22.3%-20.7%] vs 12.6% [95% CI, 12.0%-13.3%]; AOR, 1.91 [95% CI, 1.70-2.14]). Families of children with disabilities had more difficulty paying medical bills (AOR, 1.97, 95% CI 1.76-2.21) and were more likely to be very worried about medical expenses (AOR, 1.35 [95% CI, 1.18-1.55]). These families also experienced higher rates of delayed and forgone care due to cost compared with families of children without disabilities.
Table 1. Prevalence of Disability in Children Aged 5 to 17 Years by Sociodemographic Characteristics (N = 22 670).
| Characteristic | Weighted % of population (95% CI) | χ2 test | P value | Cramer V |
|---|---|---|---|---|
| Presence of disability among all childrena | 17.4 (16.7-18.1) | NA | NA | NA |
| Disability subtypes (a child could have >1 type) | ||||
| Sensory | 0.6 (0.5-0.8) | NA | NA | NA |
| Mobility | 0.8 (0.7-1.0) | |||
| Communication or cognition | 3.2 (2.9-3.5) | |||
| Self-care | 0.6 (0.5-0.7) | |||
| Emotional or behavioral | 10.8 (10.2-11.3) | |||
| Learning or developmental | 9.8 (9.3-10.3) | |||
| Age, y | ||||
| 5-11 | 16.6 (15.6-17.5) | 7.1 | .008 | 0.02 |
| 12-17 | 18.2 (17.3-19.1) | |||
| Sex | 19.3 (18.3-20.3) | |||
| Male | 15.3 (14.4-16.3) | 36.1 | <.001 | 0.05 |
| Female | 19.3 (18.3-20.3) | |||
| Race and ethnicity | ||||
| Hispanic | 15.9 (14.6-17.2) | 18.4 | <.001 | 0.06 |
| Non-Hispanic American Indian or Alaska Native | 22.7 (16.8-28.6) | |||
| Non-Hispanic Asian | 8.2 (6.4-9.9) | |||
| Non-Hispanic Black or African American | 19.2 (16.9-21.5) | |||
| Non-Hispanic White | 18.2 (17.3-19.2) | |||
| Otherb | 17.8 (14.6-21.0) | |||
| Nativity | ||||
| US | 17.7 (16.9-18.4) | 12.9 | <.001 | 0.03 |
| Outside US | 12.6 (9.9-15.3) | |||
| Family income as % of federal poverty level | ||||
| <50 | 27.5 (26.0-28.6) | 4.6 | <.001 | 0.11 |
| 50-99 | 24.9 (24.1-25.6) | |||
| 100-199 | 19.0 (18.4-19.6) | |||
| 200-299 | 15.5 (14.8-16.1) | |||
| 300-399 | 14.8 (14.0-15.4) | |||
| 400-499 | 16.0 (14.8-17.1) | |||
| ≥500 | 13.4 (13.0-13.8) | |||
| Rurality | ||||
| Nonrural | 17.0 (16.2-17.7) | 6.4 | .01 | 0.02 |
| Rural | 19.8 (17.8-21.7) |
Disability identified if the respondent reported the child had “a lot of difficulty” or “cannot do it at all” for 1 or more of the core functioning domains of seeing, hearing, mobility, self-care, communication, learning, remembering, concentrating, accepting change, controlling behavior or making friends, and/or had daily anxiety or depression or currently had autism spectrum disorder, intellectual disability, or a learning disability.
Included other single and multiple races (specific races not available in the public files).
Table 2. Health Care Costs, Concerns, and Hardships for Children With Disabilities Compared With Children Without Disabilities.
| Characteristic | Finding among children, % (95% CI) | Adjusted odds ratio (95% CI)a | |
|---|---|---|---|
| With disabilities | Without disabilities | ||
| Type of insurance | |||
| Private only | 42.7 (40.4-45.0) | 56.5 (55.1-57.9) | 0.64 (0.57-0.72) |
| Public only | 49.1 (46.9-51.2) | 36.4 (35.1-37.7) | 1.42 (1.26-1.60) |
| Private and public | 4.4 (3.4-5.4) | 1.5 (1.3-1.7) | 2.79 (2.10-3.71) |
| Uninsured | 3.8 (3.1-4.5) | 5.6 (5.1-6.2) | 0.67 (0.54-0.82) |
| Financial hardships | |||
| Family reported difficulty paying medical bills | 19.9 (18.3-21.5) | 11.2 (10.6-11.8) | 1.97 (1.76-2.21) |
| Family reported being very worried about paying medical bills if child got sick or had an accident | 11.7 (10.3-13.0) | 8.9 (8.2-9.6) | 1.35 (1.18-1.55) |
| Delayed child’s medical care due to cost in past year | 2.4 (1.8-3.1) | 1.1 (0.9-1.3) | 2.20 (1.68-3.16) |
| Child’s medical care forgone due to cost in past year | 2.3 (1.7-2.9) | 0.9 (0.7-1.1) | 2.64 (1.89-3.69) |
| Delayed child’s prescriptions due to cost in past yearb | 1.4 (0.9-1.8) | 0.6 (0.4-0.7) | 1.55 (1.02-2.34) |
| Child’s prescriptions forgone due to cost in past year | 2.4 (1.7-3.0) | 0.9 (0.7-1.1) | 2.73 (1.96-3.80) |
| Any of the 6 hardships | 22.3 (20.7-23.9) | 12.6 (12.0-13.3) | 1.91 (1.70-2.14) |
Adjusted for sociodemographic characteristics that were statistically associated with the outcomes and not collinear (race and ethnicity, born in US, federal poverty level, and rurality). All adjusted odds ratios are statistically significant (P < .05).
The χ2 for this comparison was not significant (P = .16), but the adjusted odds ratio was. All other χ2 comparisons were statistically significant (P < .05).
Discussion
This study contributes to the existing literature by identifying that while insurance coverage is higher among children with disabilities, their families had higher adjusted odds for all of the financial hardships evaluated, compared with families of children without disabilities. This finding suggests that insurance is inadequate for disabled children. A key component of adequate insurance is the lack out-of-pocket expenses or having out-of-pocket expenses that were usually or always reasonable, such as for copays and coinsurance for diagnostic tests, visits, services, and treatments.3 Proposed cuts to the federal contribution to Medicaid6 would likely exacerbate the financial distress of these families. These data demonstrate a need to structure health insurance policies to ensure that children with disabilities have their needed medical care covered in a way that is not financially burdensome to families.3 This study is limited by the cross-sectional nature of the survey design, which does not allow for assessment of causality. Nonetheless, recognizing that nearly one-fourth of families of children with disabilities face financial hardships, worry about the cost of health care, and/or delay or forgo health care for their children with disabilities should be a call to action to improve insurance adequacy.
eAppendix.
eReferences.
Data Sharing Statement
References
- 1.Baldwin S. The Costs of Caring: Families With Disabled Children. 1st ed. Routledge; 2015. [Google Scholar]
- 2.Gaffney A, Dickman S, Cai C, McCormick D, Himmelstein DU, Woolhandler S. Medical uninsurance and underinsurance among US children: findings from the National Survey of Children’s Health, 2016-2019. JAMA Pediatr. 2021;175(12):1279-1281. doi: 10.1001/jamapediatrics.2021.2822 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 3.Validova A, Strane D, Matone M, et al. Underinsurance among children with special health care needs in the United States. JAMA Netw Open. 2023;6(12):e2348890. doi: 10.1001/jamanetworkopen.2023.48890 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 4.Zablotsky B, Lessem SE, Gindi RM, Maitland AK, Dahlhamer JM, Blumberg SJ. Overview of the 2019 National Health Interview Survey questionnaire redesign. Am J Public Health. 2023;113(4):408-415. doi: 10.2105/AJPH.2022.307197 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 5.WG/UNICEF child functioning module (CFM). Washington Group on Disability Statistics. 2017. Accessed January 4, 2025. https://www.washingtongroup-disability.com/question-sets/wg-unicef-child-functioning-module-cfm/
- 6.Huberfeld N, McCuskey E, Ulrich MR. The US presidential election’s high stakes for the future of medicine. JAMA. 2024;332(17):1421-1422. doi: 10.1001/jama.2024.19952 [DOI] [PubMed] [Google Scholar]
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
eAppendix.
eReferences.
Data Sharing Statement
