Jori F. Bogetz, MD, Seattle Children’s Hospital, WA, USA – is an Assistant Professor of Pediatrics at the University of Washington School of Medicine, the Director of Research at the Treuman Katz Center for Pediatric Bioethics and Palliative Care, and an attending physician in pediatric palliative care at Seattle Children’s Hospital.
Fiona Sampey, PA-C, MMSc, Advanced Conversations, MT, USA – is a physician assistant working in community-based palliative care with Big Sky Home Health, Hospice & Palliative Care in Bozeman, MT. She is also the Co-Founder of Advanced Conversations and a Clinical Associate at the University of Washington School of Medicine.
Feature Article
Bohnhoff, J., Bodnar, C., Graham, J., Knudson, J., Fox, E., Leary, C., Cater, L., & Noonan, C. (2025). Medicaid‑Insured Children with Medical Complexity in a Rural State. Academic Pediatrics, 25(4).
Commentary
In the recent article by Bohnhoff et al., Medicaid-Insured Children with Medical Complexity in a Rural State, the authors examine clinical characteristics, rurality, and access to care across Montana through a cross-sectional study of the state’s Medicaid claims data from 2016-2021. In this study, children with medical complexity (CMC) <=18 years old were identified according to the Pediatric Medical Complexity Algorithm. For each child, the authors analyzed the first 36 months after their first month within the dataset during the study period. Using a database of providers, the authors calculated drive times from CMC’s homes to the nearest pediatric subspecialist and examined the difference in median driving distances by medical complexity and self-identified race. This is important because >50% of pediatric subspecialists in the US work at academic urban medical centers and CMC/families in rural areas report greater unmet healthcare needs and emergent healthcare utilization than those living closer to care. Of note, Montana is the fifth most rural US state.
The study identified 126,873 children of which: 23% lived in rural areas and 8.5% were CMC. CMC status was associated with older age, white race, Hispanic ethnicity, male sex, lack of Medicaid/CHIP (Children’s Health Insurance Program) enrollment, disability, and urban home setting. CMC had shorter median drive times to care than children with noncomplex medical conditions and children without chronic conditions (28 vs 34 and 43 minutes, 95% CI of differences 4-9 and 6-11 minutes). Notably, the median distance from care was greater for American Indian CMC than CMC of other races (73 vs 23 minutes, 95% CI of difference 42–52 minutes). American Indians living off reservation lands were more likely to be CMC than children living on reservation lands (9% vs 6%) and live closer to subspecialty pediatric care compared to other children (16 vs 26 minutes, 95% CI on difference in medians 9–11 minutes). Evaluating this, the authors also raised a concern for their data implying that one effect of access-to-care may be underdiagnosis of CMC in rural populations. The main limitations of the study were that private and/or tribal insurance claims were not examined and that the databases may have been incomplete and/or contained inaccuracies. The authors conclude that many CMC in rural areas, especially those who identify as American Indian, live far from subspecialty pediatric providers which may impact their access to care.
As a palliative care physician assistant in Montana (FS) and a doctor at an urban regional academic referral hospital in the Pacific Northwest (JB), we are familiar with the challenges many CMC and their families face. Despite efforts to expand pediatric palliative care in Montana, children continue to have limited access to these services in their local communities and care at regional medical centers can feel far from home. We appreciate this study’s focus on the needs of rural CMC and access to care issues. Identifying populations, including Native American populations, who face underexamined yet very real issues regarding pediatric care is crucial to improving child health. CMC and their families need additional supports to manage and thrive in the setting of chronic complex health conditions. We noted that Dr. Shaquita Bell provided guidance on this paper and wondered what other ideas that center Native American perspectives would be important here. How might applied qualitative methods from within this population lead to greater understanding of these issues and strategies to address them? With the recent concerns regarding Native American healthcare due to changes in the department of Health and Human Services in the US, this is a crucial and timely question.
Similarly, as many US states grapple with concerns about Medicaid,6,7,8,9 studies like this are important to demonstrate the needs of children, especially CMC, across the country. Montana has a trigger law for Medicaid expansion that rolls back if funding falls below 90% unless alternative support is found elsewhere, and lawmakers reauthorize its expansion in 2025. Montana already experienced the largest percentage drop (15%) in the US of children receiving Medicaid/CHIP benefits once additional protections during the COVID-19 pandemic ended.4,9 Although Medicaid/CHIP insurance coverage was lower in CMC compared to other children in this study, this program remains critical to child health in the state and in the US. It is important for pediatric providers and those in palliative medicine to engage in developing solutions related to this important issue that is so critical to child health.
References
- Turner A, Ricketts T, Leslie LK. Comparison of number and geographic distribution of pediatric subspecialists and patient proximity to specialized care in the US between 2003 and 2019. JAMA Pediatr. 2020;174:852–860. https://doi.org/10.1001/jamapediatrics.2020.1124
- Skinner AC, Slifkin RT. Rural/urban differences in barriers to and burden of care for children with special health care needs. J Rural Health. 2007;23:150–157. https://doi.org/10.1111/j.1748-0361.2007. 00082.x
- Bell S, Deen JF, Fuentes M, et al. Caring for American Indian and Alaska Native children and adolescents. Pediatrics. 2021;147:e2021050498. https://doi.org/10.1542/peds.2021-050498
- Galewitz, P. (2024, December 9). 9 states poised to end coverage for millions if Trump cuts Medicaid funding. KFF Health News. https://kffhealthnews.org/news/article/medicaid-expansion-funding-trigger-laws-9-states-trump-administration/
- Stolberg, S.G. (2025, April 7) R.F.K. Jr’s plan to send health officials to Indian country angers Native leaders. NYTimes.com. https://www.nytimes.com/2025/04/07/us/politics/rfk-indian-health-service.html
- Berry JG, Hall M, Neff J, et al. Children with medical complexity and Medicaid: spending and cost savings. Health Aff Proj Hope. 2014;33:2199–2206. https://doi.org/10.1377/hlthaff.2014.0828
- Ming DY, Jones KA, White MJ, et al. Healthcare utilization for Medicaid-insured children with medical complexity: differences by sociodemographic characteristics. Matern Child Health J. 2022;26:2407–2418. https://doi.org/10.1007/s10995-022-03543-x
- National Institutes of Health. (2017, September). Medicaid and American Indians and Alaska Natives – Digital Collections – National Library of Medicine. U.S. National Library of Medicine. https://collections.nlm.nih.gov/catalog/nlm:nlmuid-101717147-pdf
- Elizabeth Williams, A. B., & 2025, F. (2025, April 25). Eliminating the Medicaid Expansion Federal match rate: State-by-state estimates. KFF. https://www.kff.org/medicaid/issue-brief/eliminating-the-medicaid-expansion-federal-match-rate-state-by-state-estimates
View the 2025 Issue #5 Citation List in Library