Reducing the Impact of Intellectual and Developmental Disabilities on Heath in Tribal Communities

Introduction: Children with intellectual and developmental disabilities (I/DD) are at high risk for poor health as adults. In prevention science, it is critical to understand the larger scope of the health and wellness of the populations we serve and identify indicators for poor health in early childhood. Diverse populations are more likely to have poorer health outcomes due to various social determinants. American Indian and Alaska Native children (AI/AN) are at an even higher risk due to decreased use of preventative health services and disability services. The early childhood period is critical for establishing healthy behaviors to reduce the impact of I/DD on health. Understanding the role that prevention scientists have in primary prevention of I/DDs and can be helpful in addressing health disparities in tribal communities.

Methods: The “Northeast Kansas Tribal Developmental Disabilities Needs Assessment” identified the needs of young AI/AN children with I/DD and their families in northeast Kansas. It assessed for barriers to accessing specialty care and developmental services and evaluated the cultural responsiveness of disability and developmental services. Two tribal communities were targeted in this needs assessment including the Prairie Band Potawatomi Nation and Kickapoo Nation of Kansas as well as AI/AN families living in Lawrence, KS. Community members, family members with children with I/DD, healthcare providers, educators, tribal leaders, and other professionals identified their community’s strengths and areas of need. A qualitative analysis of community forums conducted was conducted.

Results: The following themes emerged: difficulty with social-related challenges, lack of culturally responsive services, limited or no access to parent advocacy and support groups, and complicated referral procedures for developmental services. AI/AN children with I/DD were not being identified in a timely manner.

Conclusion: The needs assessment revealed an urgent need to develop a strategic plan to improve the quality of developmental and health services for young AI/AN children in Kansas to reduce the impact of I/DD on long-term health, academic achievement, and quality of life.