Home and Community Based Long-Term Care in American Indian and Alaska Native Communities
Dr. Yvonne Jackson
Today, an increasing number of American Indian and Alaska Native Elders need assistance, and most prefer to have long-term care services provided in their homes and communities. While many people associate long-term care only with nursing homes, home- and community-based long-term care (HCBLTC) is actually much broader in scope. It consists of a range of services aimed at helping people with chronic conditions to compensate for limitations in their ability to function independently and helping caregivers to sustain their roles in assisting at-risk family members and friends. HCBLTC range from the least restrictive services, usually provided in the community, to the most restrictive services, usually provided in an institution such as a nursing home.
To learn more about specific issues affecting HCBLTC in Indian country, the Administration on Aging, the Native Elder Health Care Resource Center at the University of Colorado, and the National Resource Center on Native American Aging at the University of North Dakota surveyed key tribal program administrators from 108 Federally recognized tribes nationwide. The following information was collected:
- availability of HCBLTC programs and resources in American Indian and Alaska Native (AI/AN) communities;
- how these programs and services are funded; and
- barriers to establishing such programs and services in AI/AN communities.
This survey found wide disparity between the need for HCBLTC services and their actual availability in Indian communities. Frequent need for emergency and acute primary health care was usually met. Mental health, home health aid, homemaker/personal care, home maintenance, transportation, and outreach services were frequently needed and were only moderately met. Also, adult day care, respite care, assisted living, and short-term rehabilitation were frequently needed; these needs were rarely or never met.
Although tribal elders faced a number of barriers in using HCBLTC services, the most frequently cited obstacle was bureaucratic procedures. Since no coordinated system of HCBLTC existed in most Indian communities, elders often must complete separate application forms for each type of service. Additionally, since each service could have different eligibility criteria, different forms of documentation were often needed. To address this issue, tribes strongly felt the need to develop comprehensive and coordinated systems of HCBLTC.
Additionally, tribes reported that excessive administrative regulations, inadequate information, and limited access to decision-makers were common barriers to developing both federal- and state-funded programs, but especially for the latter.
Other service barriers that were identified include elders' lack of awareness and uncertainty about eligibility and perceived need for services. Since many programs already provide information and referral assistance, it may be of value to review what information is available, how it is being provided to elders, and how the process of information and referral could be improved.
Additional service barriers centered around provider issues, such as provider insensitivity and prejudice. The respondents indicated that all service providers need training in how to work with older adults to provide more sensitive and relevant services. Service providers who were not AI/AN were perceived as requiring additional training to develop cultural competence.
Lack of financial resources was seen as a major obstacle in developing HCBLTC programs and services. This included limited funds to operate current programs as well as difficulty in obtaining new funds to develop additional ones. Respondents argued that advocates for AI/AN elders must be involved in all discussions of Medicare, Medicaid, and health care reform to assure that the needs of the elders are included in any reform.
Many other barriers encountered were also reported to be a consequence of inadequate resources. Given sufficient resources, respondents believed that there would be less of a need to prioritize required services and to mandate that some specific services be provided--regardless of local needs. However, even with limited resources, most tribes expressed the desire to determine their own priorities based on their local needs. This area of local flexibility should be explored in developing new legislation for HCBLTC services.
The development of comprehensive and coordinated HCBLTC programs and services will be a long process. Legislative reform is one important step along this path; however, equally important are expanding the capacities of administrators and providers and developing a network of providers with the ability to address the scope and depth of potential demands for HCBLTC services.
Please direct any inquiries/requests for copies of this report to:
Dr. Yvonne Jackson
Administration on Aging,
U. S. Department of Health and Human Services
330 Independence Ave. SW Rm. 4257
Washington, DC 20201
Click here for The Native Elder Health Care Resource Center
Click here for the Administration on Aging Home- and Community-Based Long-Term Care in American Indian and Alaska Native Communities Report