This page includes reports, fact sheets, web links, and other resources that focus on research related to LTSS needs and successes in Indian Country.
An Introduction to LTSS
Older American Indians and Alaska Natives are a rapidly growing population group.
- According to the Administration on Aging, the number of AI/AN people 65 and older is projected to increase by nearly 75% between 2010 and 2020.
- While tribes may understand elderhood as beginning at a different age, this website defines "older adults" as age 65 and older, because Medicare eligibility begins at age 65 and because many national statistics (like the Census) use age 65 as a cutoff.
Overall, AI/AN populations experience some of the highest rates of chronic disease and disability in the U.S1. Due to the increase in the AI/AN older population and the high level of disability within this population and among younger people, tribal communities are experiencing an increased need for long-term services and supports for their elders and tribal members with disabilities.
- Issues Affecting American Indians and Alaska Native Consumers with Disabilities (PDF) (PDF, 23 pages)
- Report on disability among AI/AN populations and related issues, including indigenous perspectives on disability, health status statistics, and examples of programs serving AI/AN individuals with disabilities
1Goins, R. T., Bogart, A., & Roubideaux, Y. (2010). Service Provider Perceptions of Long-Term Care Access in American Indian and Alaska Native Communities. Journal of Health Care for the Poor and Underserved, 21(4), 1340-1351.
LTSS Research: Annotated Literature Review, Caregiver Support in Indian Country (PDF) (PDF, 40 pages) – an annotated literature review that discusses the challenges of caregiver support in American Indian and Alaska Native communities, available support for caregivers, and recommendations to overcome barriers. The document includes a glossary of terms, a 4-page executive summary and 29 research sources.
Fact sheets describe each program and present findings on successes and innovations, funding, lessons learned, and how each program addresses culture in providing caregiver support services.
Elder Abuse Prevention
- Elder Abuse Prevention Resources in Indian Country: National Indigenous Elder Justice Initiative (Video)
- Webinar focused on the National Indigenous Elder Justice Initiative (NIEJI) and the resources available to prevent elder abuse in Indian Country.
- Best Practices in Elder Abuse Prevention: A Snapshot of Research Findings (PDF) (PDF, 1 page)
- Overview of elder abuse research, including types of abuse, challenges to addressing abuse, and recommendations for establishing elder abuse prevention programs
- Elder Abuse in Indian Country: An Annotated Bibliography (PDF) (PDF, 42 pages)
- Literature review paper that defines types of elder abuse, its causes, and approaches to its prevention, with special attention given to issues unique to AI/AN populations. The report content is followed by detailed summaries for 31 additional research sources.
- Reclaiming What Is Sacred: Addressing Harm to Indigenous Elders and Developing a Tribal Response to Abuse in Later Life (PDF, 60 pages)
- A report that explains the issue of elder abuse, offers strategies for preventing elder abuse in tribal communities, and encourages communities to look closely at how elders are treated and to use local strategies to respond to abuse compassionately and effectively
These fact sheets offer program descriptions and present each program's strategies for success, funding, lessons learned, and ways of attending to cultural considerations.
- Adult Services Program: Poarch Band of Creek Indians (PDF) (PDF, 2 pages)
- Elder Abuse Prevention Interventions Program: Winnebago Tribe of Nebraska (PDF) (PDF, 2 pages)
- Elder Abuse Prevention: Oneida Tribe of Indians of Wisconsin (PDF) (PDF, 2 pages)
- Elderly Protection Team Department: Standing Rock Sioux Tribe (PDF) (PDF, 2 pages)
- Elderly Services Program: Central Council Tlingit and Haida Indian Tribes of Alaska (PDF) (PDF, 2 pages)
Emerging LTSS Issues in Indian Country
Emerging LTSS Issues in Indian Country: Executive Summary (PDF) (PDF, 3p) – a summary document that highlights three LTSS topic and their related issues within Indian Country—LTSS funding for HCBS, Adult Family Homes, and Alzheimer’s and Dementia.
Best Practices: Improving Care for Adults with Disabilities in Indian Country (PDF) (PDF, 9p)
Highlights three tribal programs and their approaches to caring for adults with disabilities.
Emerging LTSS Issues in Indian Country: Improving Care for Adults with Disabilities in Indian Country (PDF) (PDF, 10p)
A report that highlights key themes from research on the overall adult population with disabilities as a framework for future studies on the topic of AI/AN adults who have developmental and/or acquired disabilities.
Emerging LTSS Issues in Indian Country: Rebalancing LTSS Funding for HCBS (PDF) (PDF, 16p) – a paper that provides a snapshot of the current information on efforts to rebalance LTSS funding for HCBS in Indian Country that breaks down Medicaid funding information, and provides insights from two current programs.
- Emerging LTSS Issues in Indian Country: Adult Family Homes (PDF) (PDF, 10p) – a paper that provides a snapshot of a HCBS care option, Adult Family Homes. A care option that offers a viable solution for tribes that want to provide culturally appropriate, affordable, long-term care to elders or others in need of such services that keeps tribal members in the community.
- Emerging LTSS Issues in Indian Country: Alzheimer’s and Dementia (PDF) (PDF, 10p) – a paper that provides a snapshot of current information about Alzheimer’s disease and dementia in Indian Country, barriers preventing diagnosis, and recommendations for tribal communities to take proactive measures to address challenges.
- Emerging LTSS issues in Indian Country: Caregiver Training (PDF) (PDF, 14p) – a paper that provides a snapshot of the existing literature on caregiver training in Indian Country. The paper addresses need for caregiver training, the evaluation of caregiver training programs, funding and recommendations that may help tribal programs and tribal communities improve and increase caregiver training.
- Emerging LTSS issues in Indian Country: Disability and Housing (PDF) (PDF, PDF 15p) – a paper that provides a snapshot of housing programs in tribal communities. The paper addresses the barriers that AI/ANs with disabilities face, funding sources for programs and promising research focused on culturally relevant housing solutions for AI/ANs with disabilities.
- Emerging LTSS issues in Indian Country: Assisted Living (PDF) (PDF, 17p) – a paper that highlights stories from three tribal communities and their process of developing assisted living facilities, their challenges, successes and lessons learned.
- Offering and Funding Home- and Community-Based Services in Indian Country (PDF)(PDF, 17 pages)
- Overview of ways that AI/AN communities provide home- and community-based care, including common funding sources, five program profiles, and recommendations from program administrators
Hospice and Palliative Care
- Hospice and Palliative Care in Indian Country (PDF)(PDF, 2 pages)
- Fact sheet that analyzes, as a group, the four hospice programs that serve Indian Country
- Hospice in Indian Country: Literature Review (PDF) (PDF, 37 pages)
- Literature review paper that defines hospice and palliative care and explains access, use, and cultural issues for these care types for AI/AN populations. A 5-page report overviews relevant issues, and the document gives detailed summaries for 25 additional research sources.
- LTSS Research: Hospice in Indian Country (PDF) (PDF, 11 pages)
- Literature review paper that reviews recent research underscoring the need to address barriers identified in the 2014 literature review by the Centers for Medicare and Medicaid Services, through infusing culture, and values into end-of-life-care for AI/AN populations. A 11-page report overviews the barriers, and recommendations related to providing end-of-life care.
- Caring for those nearing end-of-life: Providing compassion and dignity for our elders (PDF)
- Infographic giving a clear and colorful overview of hospice and palliative care, and needs and strategies for providing it in tribal communities
These fact sheets describe each program and present their successes, innovations, funding, lessons learned, and approaches to incorporation of culture in end-of-life care.
- Cherokee Nation Home Health Services - Hospice of the Cherokee (PDF) (PDF, 2 pages)
- University of New Mexico - Palliative Care (PDF) (PDF, 2 pages)
- Tohono O'odham Nursing Care Authority - Tohono O'odham Hospice (PDF) (PDF, 2 pages)
- Pueblo of Zuni - Zuni Home Health Care Agency (PDF) (PDF, 2 pages)
LTSS for Native Veterans
- LTSS Research: LTSS for Native Veterans (PDF) (PDF, 38 pages)
- A literature review that provides an overview of the LTSS need for Native veterans, barriers to care, efforts by the Indian Health Service and the U.S. Department of Veterans Affairs, and recommendations to improve care. The document includes 25 summaries of research sources.
These fact sheets describe programs that offer services to Native Veterans and include success, innovations, funding, and lessons learned
- Ho-Chunk Nation Division of Veterans Affairs (PDF) (PDF, 2 pages)
- Lac Courte Oreilles Elder Services (PDF) (PDF, 2 pages)
- Native American Veterans Association (PDF) (PDF, 2 pages)
- Nursing Homes in Indian Country Report (PDF) (PDF, 14 pages)
- Overview of tribally operated nursing home facilities, including a look at facility ratings on the Medicare Nursing Home Compare website
- Nursing Homes in Indian Country Directory 2016 (PDF) (PDF, 5 pages)
- Directory of tribally run nursing homes currently operating that includes contact information and tribal affiliation for each facility
LTSS Videos and Program Examples
Program profiles provide real-life examples of how tribes are successfully implementing LTSS in their communities. Explore the program examples section to learn about the diverse tribal programs currently in operation.
Additional program profiles are also presented as brief videos. The videos page shares insights from the people who have planned and implemented these current tribal and urban LTSS programs.