This issue brief discusses the role of home and community-based long-term care in tribal communities, the unique rules that may apply to tribal communities, and the barriers and cultural factors that advocates should be aware of when supporting tribal elders in accessing these benefits.
Introduction
In American Indian and Alaska Native (AIAN) communities, elderhood often centers around cultural stewardship, leadership, and community care, rather than on age or declining physical and cognitive ability.[1] Therefore, access to home and community-based services (HCBS) is crucial for tribal elders not only because it enables them to get the care they need as they age, but also because it empowers them to fulfill the important role as an elder in their community. With HCBS, tribal elders can remain in close proximity to younger generations of people in their community and can pass down their native languages; traditional recipes; ceremonial dances, songs, and other practices; and oral history of their tribe. Tribal elders deserve HCBS solutions that enable them to age in their communities, are culturally responsive, and are developed in partnerships that uplift tribal sovereignty (i.e., tribes’ right to self-governance).
AIAN populations face the highest health inequities of any population in the United States, which creates significant challenges for AIANs as they age.[2] Tribal and AIAN older adults experience chronic health conditions at higher rates than their non-tribal and AIAN counterparts.[3] Moreover, not only do tribal elders experience higher rates of Alzheimer’s compared to white or Asian older adults, but the number of tribal elders with Alzheimer’s or other dementia is projected to increase five-fold by the year 2060.[4] Some studies suggest that tribal elders also require support with their activities of daily living—such as bathing, toileting, dressing, and ambulating—at higher rate than the general older adult population.[5]
Inequities relating to social determinants of health (i.e., the non-medical factors that impact well-being) also harm tribal elders. Low- and middle-income tribal elders are more likely to have multiple chronic diseases than those with high-income—a statistic that is alarming considering the economic inequities prevalent in tribal communities.[6] AIAN communities experience poverty at higher rates compared to the general population (14.5-17.2% versus 9.9%), and those living on tribal reservations historically experience the highest rate of poverty of any racial group in the United States (39%).[7]
The health inequities faced by tribal elders are especially unnerving given the long-standing trust responsibility—the legally enforceable duty that the federal government has to provide various services and benefits to tribes. Under this trust responsibility, the federal government has to provide health care for AIAN populations, including medical services, hospitals, and physicians.[8] Despite this, health inequities disadvantaging tribal elders have endured in our institutions and exacerbated barriers to access. For example, the Indian Health Services (IHS)—the federal agency responsible for the provision of health services to members of federally recognized tribes and which provides care to 2.5 million AIANs—is chronically underfunded, with the per capita IHS expenditures less than a third of the federal health expenditures for all other populations.[9] While IHS was authorized in 2010 to provide long-term services and supports (LTSS), Congress failed to allocate funds to IHS to do so.[10]
Medicaid and other payors have not historically reimbursed for traditional health practices, limiting elders’ access to this important component of person-centered care.[11] Other inequities, such as those arising from culturally unresponsive health care providers and geographic and transportation barriers (particularly for those living on reservations and in remote locations), further impede AIANs from receiving appropriate health care[12] Tribal elders living in remote areas face provider shortages when it comes to LTSS, including HCBS.[13]
Tribally Operated Nursing Facilities
Nursing facilities and other institutional LTSS is usually far from tribal elders’ homes and communities. In fact, as of 2020 there were only 22 tribally operated nursing facilities across the United States.[14] Moreover, there were zero tribally operated nursing facilities in the entire eastern region of the country. Against this backdrop, many tribal elders entering a nursing facility frequently are forced to leave their community, thereby separating them from important cultural experiences like traditional foods, Native languages, and ceremonial events as well as connections with family, which are highly valued in AIAN culture.[15] Community-based LTSS is crucial for tribal elders. In addition to HCBS, increased support for tribally operated nursing facilities—especially those on reservations—enable tribal elders to age in a culturally responsive environment.
Long-Term Care and HCBS
Many tribal elders require long-term services and support (LTSS) as they age. Most people prefer to age in place, rather than transitioning to an institutional setting, such as a nursing facility, and often experience better health outcomes when they do.[16] For tribal elders, HCBS enables them to remain on the reservation, near one’s community and family, and in close proximity to culturally significant practices.
LTSS describes the suite of services an older adult or a person with disabilities may require in support of their activities of daily living (ADLs) (such as eating, bathing, and dressing) to age with dignity.[17] These services can be provided in an institutional setting—such as nursing facilities—or in home and community-based settings (HCBS). HCBS allows a person to age in their own community with support that is tailored to the individual, including tasks such as cleaning and other chores, grocery shopping, medication delivery, or home-delivered meals; transportation to and from medical appointments; or community events; and in-home support with ADLs from paid or unpaid caregivers.
Medicaid is the largest payer of LTSS—including HCBS—in the United States.[18] Medicaid is a joint federal and state health insurance program available to low-income people who meet their state’s financial thresholds. Federal laws governing Medicaid make it optional for states to cover HCBS, and the optional nature of HCBS leads to inconsistent availability of HCBS between states and contributes to older adults being stuck on waitlists due to limited availability of HCBS slots in their state. Older adults who are on waitlists wait an average of 28 months after applying for HCBS before they start receiving services.[19]
The Older Americans Act (OAA) authorizes a variety of community-based services that further enable tribal elders to age in their communities, such as home-delivered and congregate meals and support for family caregivers.[20] Other sources of HCBS funding include IHS Elder Care Initiative Grant Programs, and other social services block grants, all of which are restricted in nature.[21] While these programs are important, they do not fund HCBS to the same extent as Medicaid, both in terms of funding and covered services. Other sources of health care coverage, such as Medicare and private health insurance, are not as expansive as Medicaid.[22]
Cuts to Medicaid Harm Tribal Elders
Federal budget cuts directly harm tribal elders. Historically large cuts to Medicaid and other federal funding enacted under H.R.1 limit states’ ability to provide to HCBS—an optional service—which will likely lead to longer waitlists, more restrictive eligibility requirements, or eliminating services altogether.[23] Without Medicaid’s support, the median older adult can expect to pay between $62,000 to $116,000 annually for HCBS, depending on their unique needs. Given the economic insecurity that AIAN communities face, these expenses are untenable.[24]
Without access to HCBS, tribal elders may be forced to rely on unpaid care, which is unsustainable and, for many, unavailable. Cutting Medicaid and other funding also unjustifiably shifts the responsibility away from the federal government and to family or community members who themselves may be navigating economic and health barriers. Unpaid caregivers often incur significant expenses and experience high rates of medical conditions, including declining mental health.[25] In AIAN communities, family members provide 90% of the caregiving to their elders and disabled relatives but can face burnout because of barriers to accessing supports available to caregivers.[26]
Additionally, without HCBS, tribal elders may be forced to enter institutional settings that are far from their communities, endangering their health. Tribal elders in nursing facilities that lack culturally responsive providers and practices may experience racism or cultural disrespect. For example, they may be barred from engaging in ceremonial practices, safely keeping spiritual objects, or having access to cultural events.[27] Without HCBS, tribal elders may choose to avoid necessary care as they age.
Access to HCBS for Tribal Elders
Studies have found that despite the great need for it, the majority of HCBS services are only moderately available on tribal lands (with certain services like adult day care and respite care being rarely available).[28] Barriers to HCBS for tribal elders who live on reservations are significant. Remote locations and transportation barriers (e.g., poor road conditions) prevent service providers from accessing older adults’ homes. Digital barriers like lack of phone service, broadband internet, and smart devices limit tribal elders’ ability to find information about HCBS online or by phone, submit requisite documentation, or exercise their individual rights against discrimination by filing complaints in an increasingly digital world.[29]
Housing insecurity may also be a barrier to fully receiving the benefits of HCBS; service providers cannot provide HCBS if the individual is unhoused, and homes that are deemed unsuitable may create problems that HCBS providers cannot address. Elders living on tribal lands are four times as likely to live in poor housing conditions (such as not having a sink, range, or refrigerator) or living in overcrowded conditions.[30] Housing and economic insecurity contribute to high rates of homelessness for AIANs both on and off reservations.[31]
Some HCBS programs are targeted specifically to tribal elders and therefore proactively address these barriers while also providing culturally responsive care. Some examples of these HCBS programs include ones that offer traditional foods in congregate and home-delivered meals (e.g., wild turnips, dried corn, and juneberries for the Standing Rock Sioux in North and South Dakota).[32] The Money Follows the Person Tribal Initiative (MFP TI) is a program that started in Minnesota, Oklahoma, North Dakota, Washington, and Wisconsin to support tribes and states to work together to address barriers and develop the infrastructure to increase access to HCBS for members of tribes.[33] Targeted programs such as the MFP TI enable tribes to ensure their elders have access to care that reflects their community values and norms, including by hiring tribal members to provide case management so that elders feels comfortable sharing personal information with someone from their own community.[34]
Moreover, under the federal government’s trust relationship and treaty obligations with tribes, federal Medicaid statutes make certain carve outs that can ease access to HCBS. For example, under Medicaid Estate Recovery rules (i.e., the process by which states are required to collect the cost of Medicaid from the beneficiaries’ remaining property after death) property on Native reservations and income from treaty-protected resources are excluded.[35]
Medicaid, Older Americans Act, and Indian Health Services Coordination
While IHS is dedicated solely to the provision of health care services to members of federally recognized tribes, tribal elders receiving IHS services are not precluded from also enrolling in Medicaid and Medicare and supplementing this care with benefits from other federal sources, such as services offered under the OAA
Medicaid is an important source of funding to provide HCBS to tribal elders and can help support IHS and other tribal health programs. In fact, the federal government fully reimburses states with tribally run HCBS programs for expenditures on covered services provided to AIAN elders enrolled in Medicaid, making state and tribal collaboration mutually beneficial.[36]
Federal and state policymakers should work toward better collaboration with tribal governments to identify the unmet LTSS needs of tribal elders and opportunities for targeted funds, aiming to involve tribal leaders early in the design and development process.[37] Similarly, it is crucial for direct service providers—such as enrollment specialists, staff at Area Agencies on Aging, case managers and social workers, and others—to share information about Medicaid eligibility and enrollment with tribal elders.
Conclusion
Tribal elders deserve strong long-term care infrastructure that empowers them to age in their communities and is led by tribes and tribal organizations. HCBS and other community-centered services and supports must center tribal sovereignty—reflecting partnerships, financial relationships, and legal authority that enable tribes to govern the provision of culturally responsive long-term care for their elders.
Resources
Endnotes
Univ. of Hawai’I at Manoa, Dept. of Public Health Sciences, Indigenous views of elderhood offer lessons on aging (Mar. 13, 2025); Yu-Chi Kalesekes Huang & Kathryn L. Braun, Elderhood and Healthy Aging from an Indigenous Perspective, 22 Int. J. Environ. Res. Public Health 123 (2025).. ↑
For more information about health inequities among tribal elders, see Sahar Takshi, Justice in Aging, Justice for Tribal Elders: Issues Impacting American Indian and Alaska Native Older Adults (2023). ↑
Spero Manson & Dedra Bushwald, Aging and Health of American Indians and Alaska Natives: Contributions from the Native Investigator Development Program, J. Aging Health (2021). ↑
Rachel A. Whitmer et al., Ethnic and Racial Disparities in Ten-Year Cumulative Prevalence of Dementia and Alzheimer’s Disease, 10 Alzheimer’s & Dementia 152 (2014); Rachel Conant, Alzheimer’s Impact Movement, Recognizing Native American Heritage Month (Nov. 30, 2023). ↑
National Resource on Native American Aging at the Univ. of N. Dakota, Activity Limitations Among Native American Elders (Oct. 2001). ↑
Collette Adamsen et al., Ctrs. For Disease Control, Education, Income, and Employment and Prevalence of Chronic Disease Among American Indian/Alaska Native Elders (Mar. 22, 2018). ↑
United States Census Bureau, Poverty in the United States Table A-3 Poverty Status of People by Age, Race, and Hispanic Origin Using the Official Poverty Measure: 1959 to 2024 (Sep. 29, 2025) (column M for percent of people 65 years and over living in poverty, rows 356 for American Indian and Alaska Native In Combination in 2024 and 382 for American Indian and Alaska Native Only in 2024); see Stephen Cornell and Joseph P. Kalt, Harvard U. School of Government, American Indian Self-Determination: The Political Economy of a Policy that Works, Working Paper, 8 (2010). ↑
See Indian Health Servs., Basis for Health Services (Jan. 2015); ↑
See U.S. Commission on Civil Rights, Broken Promises: Continuing Federal Funding Shortfall for Native Americans 60 (2018). ↑
Nat’l Indian Council on Aging, Long-Term Services and Supports Fact Sheet (2016) (noting that IHS received grants in 2010 to provide IHS but that funding was only temporary). ↑
Sahar Takshi, Justice in Aging, Traditional Healthcare Through Special Medicaid Waivers (Jan. 9, 2025). ↑
Sahar Takshi, Justice in Aging, Justice for Tribal Elders: Issues Impacting American Indian and Alaska Native Older Adults (2023). ↑
Ctrs. For Medicare & Medicaid Srvs., Report to Congress, Best Practices in the Money Follows the Person (MFP) Demonstration 40 (2021). ↑
Ctrs. For Medicare & Medicaid Servs., Tribal Nursing Home and Assisted Living Directory 1-5 (2020). ↑
Ctrs. For Medicare &. Medicaid, Emerging LTSS Issues In Indian Country: Rebalancing LTSS Funding for HCBS 4 (2016). ↑
Brenda Owusu et al., Aging in place: Programs, challenges, and opportunities for promoting healthy aging for older adults 9 Nursing Open 5784-85 (2023). ↑
Amber Christ & Natalie Kean, Justice in Aging, Medicaid Home and Community-Based Services for Older Adults with Disabilities: A Primer (2021). ↑
See Priya Chidambaram et al., Kaiser Family Foundation, 5 Key Facts About Nursing Facilities and Medicaid (2025). ↑
Natalie Kean & Amber Christ, Justice in Aging, Medicaid Home and Community-Based Services for Older adults with Disabilities: A Primer 8 (2020). ↑
Admin. For Community Living, Services for Native Americans (OAA Title VI) (last visited Feb. 2, 2025). ↑
Ctrs. For Medicare.& Medicare Servs., Supporting American Indian and Alaska Native People in the Community 5 (last visited Sept. 8, 2025). ↑
Priya Chidambaram & Alice Burns, Kaiser Family Foundation, 10 Things About Long-Term Services & Supports (LTSS) (2024). ↑
Natalie Kean & Gelila Selassie, What’s in the Budget Reconciliation Act of 2025 and What Does it Mean for Low-Income Older Adults’ Access to Health and Long-Term Care? (Aug. 13, 2025). ↑
Sahar Takshi & Kate Lang, Justice in Aging, Supporting Tribal Elders Through Social Security (2024). ↑
Cathy Bradley et al., Unpaid Caregiving: What are the hidden costs? 114 J. Nat’l Cancer Inst. 1431-1433 (2022). ↑
Ctrs. For Medicare &. Medicaid, Emerging LTSS Issues In Indian Country: Rebalancing LTSS Funding for HCBS 4 (2016); see also United South & Eastern Tribes Inc., The Care Gap for Indigenous Seniors: Aging in Place and Long-Term Care on Native American Reservations (2021) (noting that AIAN caregivers often do not self-identify as caregivers, meaning that general outreach to caregivers is ineffective in AIAN communities) . ↑
Sahar Takshi, Justice in Aging, Justice for Tribal Elders: Issues Impacting American Indian and Alaska Native Older Adults (2023). ↑
Ctrs. For Medicare.& Medicare Servs., Supporting American Indian and Alaska Native People in the Community 5 (last visited Sept. 8, 2025). ↑
Sahar Takshi, Justice in Aging, Justice for Tribal Elders: Issues Impacting American Indian and Alaska Native Older Adults 11 (2023). ↑
Nat’l Low Income Housing Coalition, Native American Housing (2024). ↑
Nat’l Indian Council on Aging, Barriers to Native Homeownership (2023). ↑
Ctrs. For Medicare.& Medicare Servs., Supporting American Indian and Alaska Native People in the Community 5 (last visited Sept. 8, 2025). ↑
Ctrs. For Medicare & Medicaid Srvs., Report to Congress, Best Practices in the Money Follows the Person (MFP) Demonstration 42 (2021). ↑
Ctrs. For Medicare & Medicaid Srvs., Report to Congress, Best Practices in the Money Follows the Person (MFP) Demonstration 42 (2021). ↑
Ctrs. Medicare & Medicaid Servs., 10 Important Facts about Indian Health Service and Health Insurance (2016); Hannah Diamond, Justice in Aging, Mitigating the Harmful Effects of Medicaid Estate Recovery: Strategies for State Advocates (2025). ↑
CMS, 100% FMAP for LTSS — Educate Your State (last visited Sept. 17, 2025). ↑
For tips on establishing and maintaining partnerships with tribes regarding HCBS, see Ctrs. For Medicare & Medicaid Srvs., Report to Congress, Best Practices in the Money Follows the Person (MFP) Demonstration 39-40 (2021). ↑
