Lack of Long-Term Care Services in Indian Country: An Analysis of Extending Medicaid Long Term Care Funding. to Non-638 Tribal Programs

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1 1 Lack of Long-Term Care Services in Indian Country: An Analysis of Extending Medicaid Long Term Care Funding to Non-638 Tribal Programs Jordan Lewis Doctoral Student Saint Louis University College of Public Service St. Louis, MO (314)

2 2 Introduction As the elderly AI/AN population increases, the prevalent rates of chronic conditions in Indian Country will rise dramatically, as well as the need for long-term care services. However, the Indian Health Service does not directly fund long term care for AI/AN elders. While the Medicaid program is the primary source of funding for the majority of long term care services, they only reimburse Indian health or tribal programs funded under P.L This has led to a lack of consolidation and coordination of services for elders. This paper is an analysis of a proposal to broaden the role of tribes in coordinating long term care services by extending Medicaid reimbursement for long term care services to non-638 tribal programs. Background Lack of Long Term Care Services Increased Need for Long Term Care Services Over the next decade, the number of AI/AN elders will rise dramatically due to better access to preventative care services. This in turn will increase the need for LTC services to meet their health care needs. In addition to longevity, we will see an increase in the prevalence of chronic diseases, requiring more care and funding for the health care system. Without adequate funding and community support, these increases will put a strain on the community's resources, as well as the Indian Health Service. According to the 2000 U.S. Census, about 14% of AI/AN elders (age 65 and over) have difficulty dressing, bathing, or getting around inside the home because of health problems. These "functional limitations" often make it difficult to live independently. Limited assistance in the home is frequently all that is needed for these elders to be able to remain in their

3 3 own or their relatives' homes ("Medicaid Home Care and Tribal Health Services." UCLA Center for Health Policy Research, November 2003)." Long-term care services refer to a continuum of medical and social services designed to support the needs of people living with chronic health problems and disabilities that affect their ability to perform every-day activities. Long-term care services include traditional medical services, social services, housing, and transportation. The objective of long-term care services is to provide the appropriate level of care to an elder in order to maximize their ability to function independently in the least-restrictive setting (John, 1996). Long-term care services enable individuals to remain in their homes and communities, providing them with a sense of independence, and not have to relocate. Inhome, community-based assistance from family members or formal social service agencies may be needed for an elder to accomplish certain instrumental activities of daily living such as house-keeping or home maintenance, meal preparation, or going shopping (John, 1996). The National Indian Council on Aging (NICOA) report states, "Long-term care for elders should provide an optimal degree of independent living while promoting physical and psychological well-being through prevention and therapeutic intervention (1996, 7)." Barriers to Long Term Care Services Numerous barriers to long-term care services in Indian Country exist, and a few examples of the most prominent are: Lack of transportation services in rural communities, challenges associated with recruitment, training and retention of caregivers, lack of awareness and knowledge, and planning and financing of LTC services.

4 4 The remote location of most Indian reservations and tribal lands is a barrier to long-term care. Most housing on reservations is inadequate to meet the needs of growing tribal populations, and homes may not be available for the retention of elders in tribal communities. This is compounded by the fact that most reservations are located in remote areas and it is difficult to recruit qualified LTC providers if services are available. Retaining health care professionals on reservations and in Alaska Native communities also makes it difficult to provide adequate health care, forcing individuals to leave their communities and frequently travel great distances to receive services. Increasing the availability of long-term care service will enable AI/AN elders to remain their communities, receive care in a timely manner, reduce chronic health conditions, and allow families to remain together. Currently there are no designated long-term care programs within the Indian Health System focusing and organizing health care resources to meet the needs of our elders. "Long-term care services for American Indian/Alaska Native (AI/AN) elders are typically uncoordinated in nature. Long-term care services provided by the federal government have not been consolidated under one agency and are minimal in nature (AoA, IHS, NICOA, 2002, 81)." As will be described in the next section, the Indian Health Service does not provide funding for long-term care. In addition, many tribal leaders are not aware of the array of LTC services available, or the agencies from which they are available. Another major barrier to LTC services in Indian Country is the State/Federal Medicaid Partnership. Medicaid is the largest payer of LTC services in the United States today, however tribes have difficulty in establishing Medicaid funded services on reservations.

5 5 The Need for More Funding Options for Long Term Care Services The Indian Health Service (IHS) is the primary source of healthcare for 1.5 million AI/ANs who live on or near Indian reservations. However, the IHS does not provide formal, comprehensive coverage of long-term care. "Nearly 75 years after the passage of the Snyder Act, which authorized appropriations for Indian health care - essential geriatric and long-term care services still remain unavailable. First, the federal government has not consolidated services for Indian elders - especially long-term care services - under one agency (John, 81)." Dave Baldridge states: "while funding has not been available for the development of a comprehensive, integrated system of long-term care for AI/AN elders, currently funded IHS services comprise parts of a long-term care system. The degree to which these resources are applied to the long-term care needs depends both on the local health care priorities and on the degree of organization of the local system to care for elders (interview, 6/27/03)." Due to the lack of agency coordination of long-term care services, which are largely unattainable throughout Indian Country, elders need to leave their communities to receive proper health care services. In many cases, family and community members provide home and community-based services, which most people prefer (CRS, 2002), but they are often not paid for their services. Thirty-six percent of all long-term care services are paid as out-of-pocket expenditures by families and individuals. The federal government pays 40 percent and state governments pay 24 percent. Private long-term care insurance pays less than one percent of long-term care services. It is not known to what extent tribal governments pay for home and community-based long-term care services (AoA, 1996)."

6 6 The idea of the Indian Health Service providing long-term care services has been discussed in the past, but there has not been any action to advance the idea. With the current budget cuts and restructuring of the Indian Health Service, it may be questionable whether or not the Indian Health Service should be responsible for providing long-term care services. American Indian and Alaska Native elders have the option to use other sources of funding for long-term care services, such as Medicare and Medicaid. As or nation continues to move more towards home and community-based care, this paper analyzes the possibility of establishing a greater role for tribes in the provision of longer term care services by extending Medicaid funding to non-638 tribal programs. Potential Solution: Medicaid LTC Funding for Tribal communities Medicaid pays health programs for medical assistance provided to elders, including nursing home care and home and community-based health and social services, for those who meet the eligibility criteria. Eligibility for Medicaid coverage is primarily based on income levels, and individuals can apply for coverage in each state. Medicaid then reimburses health programs for the services they provide for eligible individuals. Given the high rates of poverty on Indian reservations, a large number of AIAN elders are eligible for Medicaid coverage. Medicaid is the largest payer of nursing home care and provides increasing amounts of home-based care, usually through a state's use of Medicaid waivers or through the provision of personal care services as an optional Medicaid service (AoA, IHS, NICOA, 2002). Most of the health care services provided by Medicaid remain primarily a state responsibility. The Centers for Medicare and Medicaid Services (CMS) define basic rules for Medicaid participation and can set liberal policies on state waivers

7 7 for direct funding to tribes, although this flexibility continues to remain unnoticed. In the report, Opportunities for Medicaid Financing of Long-Term Care in American Indian and Alaska Native Communities (2002), it states that long-term care services, which comprise 60 percent of the Medicaid budget, are not accessible and not designed to meet the needs of the American Indians and their own communities (AoA, IHS, NICOA, 2002)." Over the past few years the concept of "Systems of Care" has become more prominent throughout the U.S. and Indian Country. Systems of Care are defined as "an approach that facilitates these informal partnerships to create a broader, more seamless array of services and supports. This approach to care is based on the development of a strong infrastructure of interagency collaboration, individualized care practices, culturally competent services and supports, and child and family involvement in all aspects of the system. The end result is better outcomes for children and families (ACF, 2003)." The Systems of Care concept is a more effective means of delivering services to people over individual service delivery systems. Unfortunately, the Indian Health Service does not have sufficient services available for this type of program, and is not a primary source of long-term care services for AI/AN. Tribal programs funded under P.L , which allows them to directly manage their own health care services, can receive funding for long-term care services.. Section 1905(b) of SSA Title XIX (Medicaid) states that " the Federal medical assistance percentage shall be 100 per centum with respect to amounts expended (by States) as medical assistance for services, which are received through an Indian Health Service facility whether operated by the Indian Health Service or by an Indian tribe or tribal organization (as defined in Section 4 of the Indian

8 8 Health Care Improvement Act). If this funding for long-term care services by Medicaid could be extended to non-638 tribal programs, then a systems of care approach could be adopted by tribes to create a better coordinated system of care. One proposal has been discussed to encourage CMS to interpret this 100% Federal Medical Assistance Percentage (FMAP) be paid to states for amounts expended as medical assistance for LTC services administered by tribes in any of their programs. This measure would extend 100% FMAP to states so that they could reimburse non-638 tribal programs on reservations for the provision of long-term care services. The original CMS position was for states to receive 100% FMAP for payments made to IHS facilities. This was changed in 1996, when CMS extended 100% FMAP to states for services provided by tribal facilities administered under tribal self-determination authorities. Extending 100% FMAP to other tribal health care programs would serve as an incentive to states to assist in removing barriers to the establishment of tribal LTC services within their communities. Tribes would have an incentive to work to establish LTC service programs given that Medicaid reimbursements would be available to them. Giving tribes more authority over the provision of long-term care services, the state would not spend as much providing care to Indians from the reservation. State Medicaid Programs receive funding from the federal government to reimburse health programs for providing care to eligible Medicaid participants, but the amount they receive is less than 100%, except for Indian health and tribal 638 programs as stated above. With current budget cuts to states, health care resources are becoming more expensive and most states are having a difficult time trying to meet the health care needs of the state population. If more tribes provide long term care services that are reimbursed

9 9 at the 100% FMAP, states do not have to contribute any funding. If the tribe does not provide these services, then the AI/AN individual must seek long term care at non-indian health programs, and the state would receive less than 100% FMAP to pay for these services. With the 100% FMAP extended to more types of tribal programs, tribes could provide culturally appropriate care to their tribal members, as well as alleviate the economic burden to the state. Challenges Extending 100% FMAP appears to have numerous benefits, but challenges also exist that must be addressed in order to successfully provide services. For example, one drawback of this proposal is that not all tribes and tribal communities have the capacity to provide long-term care services. Without adequate resources (staff, supplies, funding), this proposal would not prove beneficial to the community, or its members. A challenge posed by this proposal is the need for technical assistance and funding to provide such service(s). Many tribal leaders and community members do not understand how to access the health care system, so it will be important to ensure everyone involved is trained and continues to be supported in one capacity or another. A third barrier, or challenge, to this proposal addresses the community s population size. Indian Country consists of many small communities situated in rural areas, with a lack of access and affordable health care. These are the types of communities that would benefit most from this proposal, but most of the tribes would not be able to support a nursing home since they have such small numbers of clients. It is because of this problem that many elders in rural communities must relocate to receive adequate health care or be institutionalized. It is important to work with communities of

10 10 all sizes to ensure they receive proper care, which may require more research on what works and how to ensure its sustainability, especially as the minority aging population continues to grow. Conclusion The need for long-term care services is increasing in AI/AN communities as the number of elders with chronic diseases and disability is growing. Various sources of funding for long-term care services exist, such as Medicare, Medicaid, and the Indian Health Service, but no coordination of LTC services exist. The most effective and costefficient way to deliver long-term care services may be through establishing a 100% FMAP to states to reimburse non-638 tribal LTC programs on reservations. This funding arrangement would benefits states by reducing Medicaid costs and would not place additional demands on the Indian Health Service, which is currently underfunded. Acquiring health care services in remote settings is difficult, where almost half of the AI/AN population reside, and a majority of AI/ANs prefer to receive care at home, and this proposed solution will allow tribes to provide culturally appropriate health care and LTC services for their members.

11 11 References Administration on Aging (1996). Funding for Home and Community-Based Long-Term Care. Washington, D.C. U.S. Author. Administration on Aging (1996). Home and Community-Based Long-Term Care Services in American Indian and Alaska Native Communities. Author. Agency on Aging, Indian Health Service, National Indian Council on Aging (2002). American Indian and Alaska Native Roundtable on Long-Term care: Final Report. Authors. Baldridge, D. (2003). Phone interview. June 27, Clarkson, Mary. (2003). Centers for Medicare and Medicaid Services (CMS). Phone interview. November 14, Coleman, B. (2001). Consumer-Directed Services for Older People (Issue Brief 53). Public Policy Institute. AARP Foundation: Washington, D.C.: U.S. Doty, P. (2000). Cost-Effectiveness of Home and Community-Based Long-Term Care Services. U.S. Department of Health and Human Services. Washington, D.C.: U.S. Dupree, Dorothy. (2003). Centers for Medicare and Medicaid Services (CMS). Phone interview. November 14, Frogue, J. (2003). The Future of Medicaid: Consumer-Directed Care. The Heritage Foundation: Backgrounder Report. Washington, D.C.: U.S. John, R. and Dave B. (1996). The NICOA Report: Health and Long-Term Care for Indian Elders. NICOA and the National Indian Policy Center. Washington, D.C.: U.S. Knickman, J. and Emily S. (2002). The 2030 Problem: Caring for Aging Baby- Boomers. Health Services Research Journal. 37(4), Shaughnessy, C., Lyke, B. and Storey, J. (2002). Long-Term Care: Direction for Public Policy? Congressional Research Service (CRS). Washington, D.C.: U.S. Stone, R. (2002). Introduction: Consumer Direction in Long-Term Care. Generations Journal. 26(3), 5-9.

12 Tilly, J., Weiner, J., and Cuellar, A. (2000). Consumer-Directed Home and Community Services Programs in Five Countries: Policy Issues for Older People and Government. Urban Institute: Washington, D.C.: U.S. 12

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