Many American Indian and Alaska Natives (AI/AN) elders and people with disabilities would benefit from long-term services and supports (LTSS), which can include a wide range of services to assist individuals with healthcare needs and difficulties performing the activities of daily living. Tribes, however, often deliver these services to members using limited tribal funds due to a lack of funding from other sources. States and Tribes can increase access to LTSS by working together to leverage federal Medicaid and Older Americans Act (OAA) funds. A recent NASHP webinar examined the level of LTSS need among AI/AN, collaborative strategies in Arizona and Minnesota to address unmet needs, and key considerations for states seeking to address health disparities and strengthen LTSS.
AI/AN Communities Have High Need, but Limited Funding for LTSS
Studies indicate a high need for LTSS among AI/AN people. According to the Administration for Community Living’s (ACL) Profile of Older Americans, 47 percent of AI/AN over 65 have at least one disability, compared to 33.5 percent of all older adults. A study of more than 14,000 AI/AN elders found that nearly 90 percent of AI/AN elders have at least one chronic condition, and according to the 2019 National Health Interview Survey, 37 percent of AI/AN’s aged 65 and older experience significant functional limitations, reporting they have “a lot of difficulty” or are unable to complete tasks across core functioning domains.
Family caregivers play a major role in meeting this need for LTSS. Among AI/AN elders, family caregivers provide about 90 percent of LTSS, and roughly 1 in 3 AI/AN adults are caregivers. There are indications that these caregivers lack support—one survey of AI/AN caregivers found that they are less likely to use formal support services and more likely to pay for health-related expenses than other caregivers.
Elaina Seep, policy specialist at the National Resource Center for Native American Aging, explained that there is limited funding to meet AI/AN LTSS needs and most paid LTSS is funded by Tribes themselves. The Indian Health Service (IHS), which is the federal agency responsible for providing health services to AI/AN, does not provide funding for LTSS. While Older Americans Act (OAA), Titles III and VI offer funding, state-focused funding formulas and population requirements can limit funds or make it difficult for some Tribes to enroll as grantees and requires coordination between states and Tribes. State Medicaid programs also offer an additional avenue for funding, but implementation has been limited.
“Tribal staff have been providing these [LTSS] services...We have been for years…We’re not getting paid for them…but we’re providing them”
— Teri Morrison, Bois Forte Band
Seep reported multiple reasons for this limited implementation. Many AI/AN who are likely eligible for Medicaid are not enrolled in the program. Use of Medicaid and OAA funding has also been limited by lack of coordination, limited federal guidance, and a lack of understanding of Tribal sovereignty. Tribal sovereignty means that tribes have the authority to establish their own governments and laws—and operate their own health programs. Tribal governments, like states, have a direct relationship with the federal government. States seeking to partner with Tribes will need to recognize that the nature of the partnership will be different from that with counties, which are subordinate to states. Agreements developed to support county administration of portions of the Medicaid program will not necessarily accommodate Tribal health policies and programs. Often, provisions for the role of Tribes in the Medicaid program, including administration of home and community-based waiver services (HCBS), will need to be designed into programs and written into federal waivers. Minnesota and Arizona officials emphasized this point—stating that respect for Tribal sovereignty is crucial in program design and operations.
Minnesota Contracts with Tribes to Deliver Medicaid Home and Community-Based Waiver Services
Minnesota has worked to formalize and expand government-to-government relations with Tribes through statute and development of guiding principles, focused on promoting relationships with respect, collaboration, and support to address disparities. The state’s Medicaid agency has focused on collaborating and building contracts enabling Tribes to deliver HCBS. In 2013, the agency and its tribal partners received a Money Follows the Person Tribal Initiative grant. This grant helped them build foundational relationships and infrastructure to support continued collaboration. Key improvements advanced by Minnesota’s Medicaid agency include:
- Contracted with five of eleven Tribal Nations to enhance their capacity for LTSS. Further, state officials plan to add three more Tribes in upcoming months and have a goal of contracting with all eleven.
- Reshaped and reframed former, more hierarchical contracts as joint power agreements between the state and Tribal governments.
- Worked to simplify contracts to make potential Medicaid funding more accessible to Tribes with limited administrative capacity.
- Established a tribal collective unit within the Aging and Adult Services Division with members, several of whom live in the Tribal Nations they represent, and assigned the unit to work directly with Tribes to promote effective communications, provide technical assistance, and foster a stronger government-government relationship.
“The [Medicaid] funding has allowed us to increase our staffing. Last year we hired our first ever licensed social worker…That’s been really amazing for our clients.”
— Teri Morrison, Bois Forte Band
Tribal health officials shared successes with using Medicaid funding to expand culturally accessible services, improve administrative capacity, and strengthen government-government relationships. Tribes have been able to increase their staff and expand their array of services, including caregiver support, case management, and HCBS waiver services. Challenges still exist in overcoming bureaucratic, geographic, and systemic barriers, but Minnesota has made substantial progress with hopes to expand partnerships with more Tribes soon.
“If you are a state that shares geography with Tribes, I think you should consider establishing a tribal initiative. It’s exciting, relevant, important work.”
— Dr. Jasmine Grika, Minnesota Department of Human Services
Arizona’s Aging Agency Uses OAA Funds to Support Culturally Adapted LTSS
Arizona’s Department of Economic Security Division of Aging and Adult Services (ADES/DAAS), which administers the state’s OAA funding, worked with the 22 Tribes in the state to establish two tribal Area Agencies on Aging (AAAs). The agency contracts with the Navajo Nation Department of Health Services and Inter-Tribal Council of Arizona (ITCA), a nonprofit which represents 21 Tribal Nations. These tribal AAAs administer both Title III and VI OAA funding to provide support including in home support such as personal care, nutrition, and transportation services. Through the National Family Caregiver Support Program, they provide caregiver support including respite care, informational sessions, counseling, and training. For example, to increase the accessibility of caregiver training, Tribal AAAs partnered with aging and Tribal nonprofits to translate a caregiver support discussion series into the Navajo language.
“It's a huge need in Tribal communities. That is a common theme that we've seen throughout the years. That is, a need for caregivers [and caregiver support].”
— Jackie Edwards, Inter-Tribal Council of Arizona
Jackie Edwards, Family Caregiver Support Program Coordinator of the ITCA, describes the types of caregiver support that are becoming more available to AI/AN caregivers.
“In recent years, I’ve seen an influx of support groups popping up in the Tribal senior centers within the caregiver programs [that are] specifically tailored to Tribal caregiver needs such as renal support groups, cancer support groups, grief support groups… As far as caregiver training…we’ve implemented prayer before and after our trainings and topics are culturally sensitive…We’ve done ambiguous loss theory, nutrition, education for caregivers, providing care to someone on a renal diet in recent years.”
Arizona’s Tribal Ombudsman Program works closely with the State Long-Term Care Ombudsman to provide additional advocacy and culturally sensitive support to AI/AN LTSS residents. State certified ombudsmen have succeeded in advocating for residents’ language, customs, and traditions to meet the needs of the community and bridge cultural gaps.
With these strategies, Arizona has enhanced culturally competent care and implemented several evidence-based programs, such as the Chronic Disease Self-Management Program. The establishment of the ITCA to provide a unified voice to 21 Tribes and partner with the state has facilitated stronger government-to-government relations. Arizona still faces challenges, particularly in rural access barriers but serves as an example of partnership building to support culturally adapted LTSS.
Considerations for States
With limited federal funding, state partnerships and collaboration with Tribes is key to reducing health disparities and enhancing LTSS. Seep shared some policy actions that each state can take to be impactful partners. These include:
- Ensuring Medicaid HCBS waiver language includes Tribes as allowable providers (case management, functional assessment/screenings) and review provider requirements to identify conflicts with Tribal Nation status as government and its agencies
- Fostering Inter-Agency Collaboration between State Units on Aging (SUA), Counties, Aging and Disability Resource Centers (ADRC) and Tribal Agencies
- Training County/ADRC/SUAs and other key state divisions on key topics including how to work with Tribes, federal provisions, and exemptions for Tribes and their members
- Including Tribes and their agencies and key programs in review of proposed legislation
“We would love to work with states, and I’m assuming most tribes would also, to actually get reimbursed for the services we’re providing.”
— Teri Morrison, Bois Forte Band
Acknowledgments
The authors thank Elaina Seep of the National Resource Center on Native American Aging, Jasmine Grika and John A. Anderson of Minnesota’s Department of Human Services, Sarah Reynolds and Chris Burt of Red Lake Nation, Teri Morrison of Bois Forte Band, Patricia Sutton and Lita Nelson of Arizona’s Department of Economic Security, and Jackie Edwards and Flor Olivas of the Inter-Tribal Council of Arizona for presenting in the webinar on which this blog is based and reviewing a draft of the blog. NASHP also thanks The John A. Hartford Foundation for the generous support of this work.
The webinar, along with the presentations, are available on NASHP’s website.
