"Elders need to be near the river where they were raised “
Rose Jerue, 1989
In 1993 the National Indian Aging Agenda for the Future stated that "long term care is the single most critical issue facing American Indian elders in the 1990s. Federally funded long term care is virtually nonexistent in Indian Country. The need of Indian elders for long term care, including home health and personal care, is growing with the increasing size and longevity of the Indian population. Such services, however, remain undeveloped. Lack of care can weaken older Indians' health, cause premature hospitalization and unnecessary utilization of existing health care services in Indian Country. Chronic illness and disabilities also affect Indian elders' quality of life and ability to live independently. Rural isolation, poverty and access barriers further compound the problem for reservation elders". This statement is still true in 2019.
The older American Indian, Alaska Native and Native Hawaiian (AI/AN/NH) population is growing as is the increased number of AI/AN/NH persons living with disabilities. As a result, the Al/AN/NH populations have a significant and growing need for LTSS for their elderly (or elders) and persons with disabilities, making it a high priority to develop LTSS Resources within their own tribal communities. The need for additional resources for LTSS is based on current practices, Tribal consultation, legislation and additional information.
Currently, long term care in Indian Country tends to be fragmented, disjointed and disorganized. Most LTSS are “outside the tribe” or the community, and depend upon non-tribal resources, state public resources and therefore state approvals. Federal/state Medicaid Waiver program options are scattered and dependent on the state/tribal relationship. Preferences for culturally sensitive, person-centered care, including type and delivery of care, and service provision preferences are often limited and not considered in developing overall state systems and individual plans of LTSS for tribal elders and persons with disabilities. In addition, care is provided by non-tribal service providers with limited understanding of cultural norms and preferences.
The LTSSICNRC has been developed through consultations with tribes and tribal elders to respond to their demands for increased tribal access to expanded, culturally sensitive, person-centered home and community-based supports to enable tribal elders to remain in their homes or communities. During the annual tribal Listening Session/Consultation at the National Title VI Conference, virtually every year tribes testify for the need to take care of elders at home, and in tribal communities.
Tribes have told ACL/AoA that LTSS in Indian Country must include expanded home and community based services that blend into long term care to allow elders to live in tribal communities throughout their lives. Maintaining elders in tribal communities allows for community and personal care that can continue their cultural and historical roles. Tribal elders balance the community, by continuing their traditional roles as community advisors, teachers, and role-models and passing this knowledge on to younger age populations to sustain their Native cultures. Native cultures pride themselves that every age is as important as another, and that every age is critical to the teaching and culture of the Tribe and/or community. Native traditions and culture are generally handed down verbally and through modeling behavior. When elders or persons with disabilities are sent to outside care facilities they are lost to the community, and disrupt the community balance and continuity that is essential for community values and culture. It is vital that both groups remain in the community to continue these teachings, enhance cultural continuity and underscore the value of each individual.
A Hearing before the Special Committee on Aging, United States Senate, 95th Congress, First Session, Part II concerning the special needs of Native Elders on November 12, 1977, recommended the establishment of distinct cultural programs to meet the needs of this identified target population.
One of the programs established was the Older Americans Act (OAA) Title VI, Grants for Native Americans in 1978. The mission of Title VI is to provide assistance to help maintain tribal elders in their homes in communities. It provides funds to 1) develop nutrition and support services (Title VI Parts A & B), and to 2) develop support services for unpaid family caregivers, including limited respite care (Title VI Part C). Title VI currently funds 274 grantees, 165 sub grantees, and serves 435 Native Communities.
Through the years of Title VI program tribes have repeatedly expressed to ACL/AoA that Title VI funds are not adequate to provide all needed services to keep elders in their communities. Tribes have reported a need for continued and enhanced care beyond Title VI. To help address this need, Tribes have requested assistance from CMS, Indian Health Services (IHS) and ACL/AoA to help them move towards enhanced and expanded home and community-based services that will allow tribal elders to remain in their communities.
The Snyder Act of 1921 and the 2010 Indian Health Care Improvement Act (IHCIA) are the cornerstone legal authorities for the provision of health care to American Indians and Alaska Natives. The IHCIA legislation allowed tribes to move existing IHS dollars into the provision of LTSS. While additional funding was not included, the inclusion of LTSS in the ICHIA was an important milestone in recognizing the need for LTSS in Indian Country. Alternatives to nursing homes have taken an increasing role nationally and in AI/AN/NH communities. These promising HCBS models that focus on the cost effective provision of services in the least restrictive setting for older adults and persons with disabilities.
The Racial/Ethnic Disparities in Self-related Health Status among Adults With and Without Disabilities Morbidity and Mortality Weekly Report 57(30) 1069-1073 from the Centers for Disease Control and Prevention estimated that the number of older American Indians and Alaska Natives (AI/ANs) in 2020 will be 75% higher than it was in 2010. Elders are living longer, but with long life can come more chronic diseases and disability. AI/ANs experience high rates of diabetes, cancer, heart disease and other chronic health conditions. AI/ANs at age 18 have the highest disability rates in the country (29.9% compared to the general population rate of 19.9%).
These chronic diseases and conditions of elders as well as the disabilities of both elders and younger adults influence their ability to function independently at home and in the community which is what LTSS is designed to address.
CMS defines Long-Term Services and Supports to include:
Care provided in the home, in community-based settings, or in facilities, such as nursing homes;
Care for older adults and people with disabilities who need support because of age, physical, cognitive, developmental, or chronic health conditions, or other functional limitations that restrict their abilities to care for themselves;
A wide range of services to help people live more independently. These services can be divided into services to assist with basic "activities of daily living (ADLs) or those to assist with “instrumental activities of daily living (IADLs).
Dressing and grooming
Transferring – being able to move from a bed to a chair or into a wheelchair
Inherent to these ADLs is the ability to stand from a seated position in order to grasp or hold an assistive device, such as a walker or the ability to do this with assistance.
IADLs may include:
o Managing finances
o Managing Transportation
o Shopping and meal preparation
o Housekeeping and home maintenance
o Managing communication -telephone/email and
o Managing medication.
Purpose and Goals
The purpose of this funding opportunity is to support the formation of a LTSSICNRC. The ACL/AoA will fund one LTSSICNRC which is national in scope to work with tribes to develop a plan for expanded HCBS using the Centers for Medicare and Medicaid (CMS) Long Term Services and Supports (LTSS) Roadmap website which offers a step-by step planning process for addressing the many aspects of LTSS. The LTSSICNRC will assist tribes in using the LTSS Roadmap to plan an appropriate LTSS response for their specific communities.
The LTSSICNRC will:
work with tribes to utilize the Centers for Medicare and Medicaid Services (CMS) Long Term Services and Supports (LTSS) web-site Roadmap to plan appropriate home and community long term services and supports for their specific communities. The LTSS Roadmap offers guidance for step-by-step planning process to address and determine the many aspects of LTSS;
track the steps taken within each tribe to develop cultural responses in LTSS for replication by other tribes and organizations. Because the long term care needs of Native elders vary and need to be met by an array of resources to provide needed services in the least restrictive setting possible specific to different Tribes, Villages and Communities, tracking the steps and culturally appropriate, person-centered services and responses will provide valuable insights and models for replication by others;
locate and develop tribally-related LTSS-information and data;
advocate for the LTSS needs of specific populations; and
serve as a clearinghouse for HCBS LTSS for Indian Country, rural America, and the aging network.
The LTSSICNRC will be required to hire lead staff within 90 days of grant notification. Lead staff should have extensive knowledge in long term services and supports, a demonstrated history of work with American Indians/Alaska Natives, knowledge of health care financing and third-party billing, a demonstrated knowledge of data analysis, and, a demonstrated history of past work with tribal leadership and communities. Additionally the grantee is expected to hire adequate support staff to enable the NRC to complete all tasks and meet the goals of the program outlined in the program work plan.
The LTSSICNRC will be required to develop the LTSS website within 6 months of the program start date listed on the grantee's notice of award issued by ACL to provide information and linkages to culturally competent community-based LTSS, general community health care, elder justice information, and other LTSS related services. The website will serve as a focal point for developing and sharing technical information and expertise for Native organizations, Native communities, educational institutions, and other professionals working with Native elders.
The LTSSICNRC will develop introductory public material and information about the LTSS NRC for distribution to tribes, communities, and the general aging network.
Given the broad nature of LTSS and the intersection with many different subject matters (aging, health, financing, business acumen), successful applicants will understand the need for key partnerships and develop their application to reflect thoughtful and effective use of partners.
The grantee is expected to develop key partnerships and collaborations to complete the goals of the LTSSICNRC. Those partnerships and collaborations should be identified in the project narrative, along with the value they will bring to the NRC. Three (3) letters of commitment from partners should be included in the application.
In addition to the key partnerships and collaborations, the grantee will be required to develop and maintain a working relationship with CMS, IHS, ACL/AoA, the Department of Housing and Urban Development (HUD), and the Bureau of Indian Affairs (BIA). These federal agencies are critical to the success and completion of project goals and tasks.
Applicants should detail planned involvement from CMS's Tribal Technical Advisory Group (TTAG) and the TTAG LTSS Subcommittee. The TTAG was developed in 2004 to provide advice and input to CMS on policy and program issues impacting American Indians and Alaska Natives (AI/AN) served by CMS programs. Although not a substitute for formal consultation with Tribal leaders, TTAG enhances the Government-to-Government relationship and improves increased understanding between CMS and Tribes. The LTSS Subcommittee consist of individual TTAG members, technical advisors, and employees from CMS and IHS. The Subcommittee was formed to advice TTAG, which in turn will advise CMS, about improving access for AI/AN to existing and new LTC services that serve elders and non-elderly people with disabilities.
ACL will require that a project Advisory Committee be established within the first 120 days of grant notice. This Advisory Committee should be familiar with Native aging and LTSS. The advisory committee will not serve in a rule-making capacity, but will assist with short and long­ term LTSSICNRC planning. It will bring local Native voices to the LTSSICNRC, advice in the process of the LTSSICNRC tasks, and provide public awareness to local communities about the resource center. The Advisory Committee should be representative of populations being served, including persons with disabilities in need of long-term community assistance. A maximum of $5,000 in grant support for each year of this award can be used to support the Advisory Committee, however, additional costs could be valued towards the program using in-kind match.
The LTSSICNRC will develop a system of LTSS Tribal Navigators who will provide local tribal assistance to plan and develop LTSS in Native Communities. The LTSSICNRC will provide hands-on and on-site assistance to Tribes and Native communities to assist with community readiness and planning for the provision of home and community-based long term supports and services. The ultimate goal is to develop Native community care models to enable elders and persons with disabilities remain in their homes and communities. These Navigators will advise and assist Native communities with strategic planning, conducting needs assessments on elders and persons with disabilities, data development, assessing the necessary community response and support, and seeking partnerships, sponsors and funding.
The goals of the LTSSICNRC are to:
1. Establish an Information and Data Clearinghouse on LTSS in Native Communities to be available via the LTSSICNRC website. This Clearinghouse will include:
Available pertinent data and other relevant information regarding LTSS for Native Communities;
A complete directory of LTSS currently available in Native Communities;
2. Establish and maintain visibility for LTSS in Native Populations. It is expected that this project will serve to:
increase the visibility of LTSS in Native Communities;
increase the discussion about LTSS in and about Native Communities;
assist Native Communities in determining and establishing a system of extended HCBS LTSS;
advocate for the unique HCBS LTSS needs of Native cultures;, and
provide LTSS information to tribes and federal agencies.
3. Promote partnerships and collaborations with Native Communities, local, state and national organizations, federal agencies and others to enable LTSS development for Native elders and persons with disabilities.
The LTSSICNRC will work with the National Resource Center on Native American Aging (NRCNAA) at the the University of North Dakota to share and compile data gathered through seven (7) Cycles of Needs Assessment data gathering through Title VI programs. The grantee is required to develop a partnership with the NRCNAA, who will assist through the Title VI needs assessments. NRCNAA will also advise and assist with specific LTSS data gathering and analysis that is deemed necessary for successful project completion.
The LTSSICNRC will participate in strategic planning with tribes, CMS, IHS and ACL to move LTSS in Native Communities forward.
The LTSSICNRC will submit an Annual Report of LTSS in Native Communities to ACL. This document will be in addition to all other federal reporting requirements and will be used by tribes and federal agencies to discuss LTSS success stories, milestones, and challenges, and to advocate for enhanced service delivery.
Applicants will provide a performance plan with measurable outcomes.
Applicants will address all priorities and needs included in this funding opportunity announcement, show past work with the American Indian, Alaskan Native and Native Hawaiian populations, and clearly indicate knowledge of home and community based services and long term services and supports within a cultural setting.