The proposed project will address the health disparity of appropriate treatment for American Indian children in tribal communities who have developmental disabilities. At present, in many tribal settings, the prevalence of and factors that contribute to developmental disabilities, including prenatal substance exposure, are not known. In addition, the need for and barriers to appropriate treatment for these children are also unknown. As a result, there is a critical need to develop a system for identifying and administering appropriate interventions for children with developmental disabilities and their families using a culturally congruent approach that is consistent with community needs. The proposed project will determine the prevalence of specific developmental disabilities in the target community, and will identify potential causes and barriers to effective treatment in affected families, including substance use, family stress and mental health issues. This work will lead to a community Tool Kit to assist in access to developmental services. Finally, the project will culminate in the development and testing of a culturally congruent, collaborative care structure to decrease barriers to care, decrease family stress, and improve child trajectories. The proposed care model, the Indian Health Council Child Development Resource Center (IHC-CDRC), will be created using culturally competent strategies, viewing the child and caregiver in the context of their family and community. The IHC-CDRC will incorporate community resiliency factors into individualized family care plans, and will be rigorously tested through a randomized clinical trial in which 50 families of children with developmental disabilities will be randomized to the intervention condition, i.e., individualized assessment and implementation of a treatment plan vs. the control condition, i.e., treatment as usual while wait-listed for the intervention. The proposed study responds to priorities of the community, and is community initiated. It builds on previous Native American Research Centers for Health (NARCH) studies in this community that have focused on prenatal substance use, and is consistent with NARCH goals of enhancing research partnerships, developing American Indian researchers, and reducing distrust of research through community-based participatory research. American Indian children with developmental disabilities and their families may not have access to or uptake of appropriate services for treatment and intervention. The proposed study will contribute to better understanding of the need for and barriers to services and support for these children and families, and will test an intervention model that could be generalized for application in other tribal settings.

Public Health Relevance

The proposed project will address the health disparity of appropriate treatment for reservation-based American Indian children who have developmental disabilities. As part of this study we will determine the prevalence of developmental disabilities (DDs) and prenatal drug exposure related DDs, barriers to care, the type of care being accessed, and stress experienced by families of children with DDs. A Toolkit of available services, treatment, and resources will be created and disseminated. A culturally congruent, collaborative care structure will be created and tested using a randomized, waitlisted-control trial for increasing access to care, decreasing family stress, and improving child trajectories.

National Institute of Health (NIH)
National Institute of General Medical Sciences (NIGMS)
Minority Biomedical Research Support - MBRS (S06)
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Special Emphasis Panel (ZRG1)
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Indian Health Council, Inc.
Valley Center
United States
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Delange, Nicole; Lindsay, Suzanne; Lemus, Hector et al. (2018) Periodontal disease and its connection to systemic biomarkers of cardiovascular disease in young American Indian/Alaskan natives. J Periodontol 89:219-227