Populations researched often have little if any input in the means of data collection, analysis, or authorship of the findings published. They are excluded from participating in the scientific methods even though they are the subject of the content that is being produced. This is true for Indigenous populations and the disability community around the globe. Researchers usually use colonial methodology that does not encompass the values of these communities or have their well-being in mind. This paper examines the history of colonization and how it has infiltrated science and inhibits self-determination of Indigenous peoples. Indigenous communities need to have the means and power for self-determination. For individuals with disabilities, this includes rights to services and programs that give the respect and person-centered care they deserve to make informed decisions about their lives. Moreover, there is a recognized need for culturally appropriate services that empower American Indian and Alaska Native (AI/AN) people with disabilities to lead independent lives in their own communities—urban or rural. AI/AN cultures may view disabilities differently than those in the mainstream U.S. Barriers and challenges for AI/AN individuals with intellectual and developmental disabilities (IDD) and AI/AN families of individuals with IDD in access to services include inadequate funding, personnel shortages, housing shortages, lack of coordination among agencies, lack of consultation with tribes, and problems identifying persons eligible for services. AI/AN-specific programs that have begun to bridge the gap in access to and development of culturally competent services such as Oyáte Circle and development of collegiate courses focused on AI/AN disabilities issues. There remains a need for partnership with AI/AN tribes for disability services and incorporation of AI/AN people with disabilities as equitable partners in program development and implementation. To reach a full decolonization of IDD health care and fully embrace diversity, equity, and inclusion (DEI) principles, individuals in these communities need to be viewed as experts in their journey of resilience.

Plain Language Summary

The phrase “nothing about us without us” is a saying used by people who demand to be part of things instead of only end users. This paper is about groups of people that often have things like policies and programs made for them but not by them- Indigenous peoples and people with disabilities. They have similar experiences being taken advantage of by dominant culture. We also write about the idea of self-determination. Self-determination is the ability for a person or a nation to set goals themselves and have the proper information and tools to reach those goals. We hope to show that true diversity, equity, and inclusion (DEI) is possible for these communities, and we give examples of programs that help individuals reach their goals.

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