Race/Ethnicity and Healthcare Utilization Among Children with Intellectual and Developmental Disabilities (IDD): The Role of Usual Source of Care

Background/Purpose: Race/ethnicity plays a significant role in healthcare utilization among children with IDD. Research indicates racial and ethnic minorities with IDD face disparities in healthcare access and outcomes. This reality leads to underutilization of general healthcare services. Research reveals that usual source of care is a critical factor in healthcare use among the general population. That said, little research has been done to examine the role of usual source of care. Does usual source of care contribute to racial/ethnic disparities in healthcare utilization among children with IDD? Children with IDD often require additional healthcare. Having a usual source for their care could be especially beneficial to them and their family. This study aims to (1) understand how usual source of care could influence healthcare utilization among children with IDD; and to (2) examine the relationships among race/ethnicity, usual source of care, and healthcare utilization, among this population.

Methods: Data originated from the 2021 and 2022 National Survey of Children’s Health. We identified children with IDD by their diagnosis of Autism, developmental disability, intellectual disability, or Down syndrome. 9,751 children were identified as having IDD under this criterion. Logistic regression and generalized structural equation models were conducted to test the associations among race/ethnicity, usual source of care, and healthcare utilization in children with IDD. Survey weights and complex sample design were considered in all analyses. Healthcare utilization is measured by a dichotomous variable “whether the child saw a health care professional for medical care? (health care visits done by video or phone included).” Usual Source of Care is measured by two separate dichotomous variables “Having a usual place to go for sick and health advice” and “Having a personal doctor or nurse.”

Results: The results from logistic regressions revealed: (1) Compared to non-Latino White children with IDD, non-Latino Black and Latino children with IDD had significantly lower odds of healthcare utilization ; (2) having a usual place to go for sick/health advice and having a personal doctor/nurse significantly increased the odds of healthcare utilization; and (3) compared to White children with IDD, Black and Latino children with IDD had significantly lower odds of having a usual place. Only Latino children had significantly lower odds of having a doctor or nurse. Sequentially, we performed a generalized structural equation model to test the mediation effects of usual source of care. The model suggested having a usual place and a usual doctor or nurse mediated the relationship between being Latino and healthcare utilization. Only having a usual doctor or nurse mediated the relationship between being Black and healthcare utilization.

Conclusion/Implication: This study shows the importance of having a usual source of care to ensure healthcare utilization among children with IDD. This is particularly true for Black and Latino children with IDD. We also found that different types of usual sources of care were important for Latino children compared to Black children with IDD. Based on this difference, future interventions should be developed to meet the different needs of racial/ethnic minorities appropriately.