By R. Turner Goins

More than 5.2 million American Indians and Alaska Natives (AI/ANs) live in the United States, with a projected three-and-a-half-fold increase between 2010 and 2050 of AI/ANs ages 65 years or older. Much of what we think about aging among AI/ANs is largely based on anecdotal information and cultural stereotypes.

There is surprisingly little empirical information about formal and informal care systems that support AI/ANs, but the need for long-term-care services for AI/ANs is clear; this population has some of the highest rates of chronic disease and disability in the United States. AI/ANs are twice as likely to have Type 2 diabetes, and almost twice as likely to die from diabetes compared to non-Hispanic white cohorts. Moreover, evidence suggests that the pace of aging among AI/ANs might exceed that of other racial groups. High rates of physical disability mean AI/ANs are experiencing an expansion, not compression, of morbidity. These combined factors create a greater need for services, particularly long-term care.

Who Are the Caregivers?

Similar to other racial and ethnic groups, AI/AN elders receive the bulk of their long-term care from informal caregivers. Family care for dependent members is a value and stated preference of AI/ANs. Most families want to care for their elders in ways that preserve and promote their dignity and honor cultural traditions. The question is whether the AI/AN experience of caregiving is similar to or different from that observed in other racial groups.

In a study my colleagues and I published in The Gerontologist (51:3, 2010), we analyzed data from 5,207 American Indian adults living on two closely related Lakota Sioux reservations in the Northern Plains, and one American Indian community in the Southwest. Results indicated that attending and participating in Native events or traditional healing practices increased odds of caregiving. Only in the Northern Plains did we find that speaking some Native language at home was also associated with increased odds of being a caregiver.

Probably because large aging studies haven’t included AI/NA in sufficient numbers to examine, the role of cultural practices in AI/AN care networks had not been extensively examined, but our study suggested they might be relevant to caregiving in AI/AN communities. To support informal caregivers, it is important for researchers and practitioners to gain a better understanding of how culture and tribal values influence AI/AN family dynamics.

The second aspect of AI/AN care networks needing further clarification is how formal supports—home health, home-delivered meals, adult daycare—can support AI/AN elders and their families. This cohort’s unique political status complicates the delivery of formal support systems and influences their access to and funding for health services. The United States has a trust responsibility to provide healthcare to members of federally recognized tribes. However, the health system in place for AI/ANs often falls short of meeting this population’s needs.

According to Jim Roberts of the Portland Area Indian Health Board: “The federal responsibility for the United States to provide health services to Indian people has resulted in a meager and chronically underfunded health system. Many Indian people are reluctant to enroll in other federal health programs like Medicaid or Medicare. They believe that the Indian Health Service, an agency within the U.S. Department of Health and Human Services, is responsible for providing their healthcare and should be financed better to do so.”

U.S. Healthcare Falls Short

The Indian Health Service estimates that current appropriation for healthcare for eligible AI/ANs makes up only 52 percent of needed funding, which limits access to many types of health services. Nowhere is this disconnect more evident than in the development of long-term-care services for AI/AN elders. Although the Indian Health Care Improvement Act (P.L. 94-437) of 1976 authorized funding for expanded health services, it did not provide authority for comprehensive long-termcare services. As part of the Affordable Care Act, the recent reauthorization of the Indian Health Care Improvement Act has for the first time included new provisions for long-term care. However, Congress has never appropriated funding for the Indian Health Service to provide long-term care.

Ongoing academic and policy debates on how to ensure access to and finance formal long-term care have not addressed how these issues apply to AI/ANs. Medicaid is the largest public payer of nursing home care and increasingly provides home-based care, usually through Medicaid waivers or the provision of personal care services as an optional Medicaid service. Medicaid is a major source of long-term-care health services for AI/ANs.

Yet, each state administers its Medicaid program differently, and how tribal members receive services varies. For tribal communities with lands spanning more than one state, access to Medicaid can be further complicated. Variations in the delivery of Medicaid services mean some AI/AN tribes might not receive optimal services to support tribal members as they age.

“The mainstream health system is a payer system that requires some form of health coverage, either insurance or Medicaid and Medicare,” says Roberts. “Because Indian people lack the resources to purchase insurance, or will not participate in federal programs, they cannot access care. We hope this will change under health reform.”

In a national study my colleagues and I published in the Journal of Health Care for the Poor and Underserved (21:4, 2010) regarding availability and access to formal long-term-care services for older AI/ANs or those with disabilities, we found that the main funding source for the two least available services was Medicaid. While Medicare and Medicaid could provide significant resources to these communities for long-term-care services, there were relatively low enrollment levels in these programs among eligible AI/ANs.

The most prevalent barrier to Medicare and Medicaid enrollment for AI/ANs was a lack of awareness. The Centers for Medicare and Medicaid Services define basic rules for Medicaid participation and can set  liberal policies on state waivers for direct funding to tribes, although this flexibility appears to remain unrealized. Like the Eastern Band of Cherokee Indians, which has its own tribally run home health agency and nursing home, many tribes have responded by assuming the responsibility of providing long-term-care services supported by their own resources, grants or other federal agencies.

R. Turner Goins, Ph.D., is an associate professor, Human Development and Family Sciences and Health Policy Management, at Oregon State University’s College of Public Health and Human Sciences, Corvallis, Ore.

Editor’s Note: This article appears in the September/October 2012, issue of Aging Today, ASA’s bi-monthly newspaper covering issues in aging research, practice and policy nationwide. ASA members receive Aging Today as a member benefit; non-members may purchase subscriptions at our online store.