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Improving Long-term Care for American Indians in Region VIII
Meeting American Indian LTC Needs
Connie Bremner, Director, Eagle Shields Senior Center for the Blackfeet, Browning, MT.
Cynthia I. LaCounte, Chairperson, Trenton Indian Service Area, Trenton, ND.
Mim Dixon, Ph.D., M.A., Consultant, Mim Dixon and Associates, Boulder, CO.
Steven P. Wallace, Ph.D., Professor of Public Health and Associate Director, UCLA Center for Health Policy Research, Los Angeles, CA.
Anita Yuskauskas, Ph.D., Health Insurance Specialist, Disabled and Elderly Programs Group, Centers for Medicare and Medicaid Services, Baltimore, MD.
Linda Wright, M.Ed., Director, Aging Services Division, North Dakota Department of Human Services, Bismarck, ND.
Arlene Olney, Director, Human Services, Yakama Nation Area Agency on Aging, Toppenish, WA.
Frederick Baker, Chairman of the Board of Directors, Mandan, Hidatsa, Arikara Elder's Organization, New Town, ND.
Once needs are identified, a system that meets them must be designed, funded, and implemented. As several speakers pointed out, the current lack of infrastructure on many reservations does offer American Indian communities an opportunity to design a program that best meets their needs.
How can programs and funding sources be combined to provide a range of long-term care services?
Connie Bremner, Director of the Eagle Shields Senior Center for the Blackfeet nation in Montana, has worked for the past nine years to establish a comprehensive and coordinated system of services for elders on the Blackfeet Indian Reservation. She has created diverse programs to better serve individuals who utilize the Eagle Shield Center/Elderly Programs. These programs include the following:
The Blackfeet Personal Care Attendant Program is a Medicaid reimbursed personal assistance program for people with disabilities. It is one of the three largest programs in Montana and grossed over $1 million/year for the past three years. The program serves over 100 individuals ranging in age from infancy to the upper nineties. The program has trained over 400 individuals to date.
The Blackfeet Housing Program included the Senior Program in its five year plan and, as a result, the Senior Program moved to a new building with 16 apartments for elders age 62 and above. The building also headquarters the Nutrition Program, the Wellness Program, the Personal Care Attendant Program, the Home Health Program, and the Native American Elder Family Caregiver Support Program.
Ms. Bremner reported that developing these programs took hard work, innovation, and determination. Simply meeting all the State requirements to receive Medicaid reimbursement for services provided by the home health program took a year and a half. Ms. Bremner noted that sources of funding other than Medicaid can be used to help meet specific needs. For example, respite and personal care is funded by a combination of Medicaid funding, a demonstration grant from the Administration on Aging, and a Robert Wood Johnson Foundation Community Health Leadership Award. Also, a $32,000 grant from Meals on Wheels/Phillip Morris paid for a customized meal delivery truck.
Ms. Bremner reminded people that although applying for grants and programs takes time, the additional funding can greatly enhance services and that there are low-cost/no-cost resources to help prepare grant applications. One participant reported that a Vista volunteer had written several grant applications.
Return to Overview
What resources are available to help American Indian Communities develop their long-term care systems?
Funding and technical assistance exist to help tribes develop long-term care systems. The resources listed below are either under development or already available:
The National Indian Council on Aging (NICOA) in partnership with the National Senior Citizens Law Center is producing:
- An analysis of tribally based long-term care services.
- Brochures/monographs describing long-term care needs, preferences, and values in Indian Country.
- A Tribal Guide for Elder Care, which will provide models for tribes in care planning, explain legal and technical requirements related to long-term care services, and detail potential sources of financing.
The IHS is awarding "Competitive Grants for Development of Long-term Care Infrastructure for American Indian and Alaskan Native Elders" to help tribes and urban communities build programs that will provide long-term care services for frail elders. Although the grant application period ended August 1, 2003, this initiative also funded NICOA to be the National Support Center for Tribal Long-term Care, and NICOA is available in that role to provide technical assistance to all tribes. For more information, go to http://www.nicoa.org/.
The State of Alaska is developing a toolkit to support the development of assisted living homes. The toolkit includes a training packet, a 15 minute video, Web site, brochures, and other written materials. The toolkit is designed to raise awareness about assisted living, encourage community self assessment, change community perceptions about where long-term care is delivered, decrease predevelopment costs, and make the development process less intimidating. For information about the toolkit, go to http://www.hss.state.ak.us/dsds/.
The National Resource Center for Native American Aging is engaged in a project to provide assist tribes in conducting a needs assessment, as described earlier in this summary. For information, go to http://www.med.und.nodak.edu/depts/rural/nrcnaa/training/ index.html.
The National Resource Center for Native American Aging is developing a Web-based and paper toolkit for tribes to help them develop a long-term care system that includes a range of options. The toolkit will include information about community development, needs assessments, health promotion and prevention, home and community-based services, assisted living, nursing homes, hospice care, land and jurisdictional issues, and definitions. For information about the toolkit, go to http://www.med.und.nodak.edu/depts/rural/nrcnaa/toolkit/ index.html.
The AoA-funded Native American Caregiver Support Program helps tribes support two types of caregivers:
- Family and friends caring for elders.
- Grandparents caring for grandchildren.
This program has already provided formula grants to 178 tribes and demonstration grants to nine tribes. The formula that determines the amount of each formula grant is based on population size and result in grant awards ranging from a little over $14,000 for small tribes to just under $50,000 for large tribes. (Note: Tribes eligible for a formula grant that do not yet have a caregiver support program in place receive technical assistance to develop a program.) The demonstration grants provide $100,000/year for three years.
Tribes that receive grants must:
- Provide caregivers with information about available services.
- Assist caregivers to access services.
- Provide caregivers with individual counseling, support groups, and training.
- Provide respite care.
- Provide limited supplemental services.
For more information, visit the AoA Web site at http://www.aoa.gov/prof/aoaprog/caregiver/careprof/nfcsp_
The UCLA Center for Health Policy Research is producing a toolbox on "Medicaid Home Care Services for Tribal Health Services." The toolbox will contain information to help tribes decide whether they want to provide Medicaid funded home health care and what doing so would involve. One part of the toolbox will include State specific fact sheets with information about:
- Who is eligible for services.
- What services are covered.
- What are the service limits.
- What is the reimbursement for services.
- What issues are related to becoming a Medicaid certified provider and Medicaid billing.
- Whom to contact.
For more information, visit the UCLA Web site at http://www.healthpolicy.ucla.edu/AIAN/index.html.
Return to Overview
How can a single entry point help elders access long-term care services?
Cynthia LaCounte, Chairperson of the Trenton Indian Service Area, discussed how she had worked to consolidate access to multiple programs and funding streams through one organization. Ms. LaCounte reported that she had become convinced of the need to create a single entry point that elders could use to access multiple programs when she was Director of the Title VI program for the Area. Her vision was to picture each elder's needs as a "pie" that could be shared among all programs that could provide services, including Tribal, State, and county funded programs.
For example, if an elder lives alone, needs home repairs, and needs help with meals, then all of the agencies that serve elders could develop a service plan that outlines each program's role in meeting the elder's needs, without requiring the elder to obtain care from each individual program. The system provides seamless access to services, and seniors do not know that services are provided by a number of separate programs. Senior access services by calling only one number.
Ms. LaCounte confirmed that many barriers exist to establishing a single entry point but also pointed out that the barriers could be overcome. She further urged participants to enlist seniors in efforts to remove barriers. A group of seniors who actively advocate for the long-term care services they need can be a very effective prod for policymakers and program managers.
Return to Overview
How can Medicaid be used to finance the long-term care services provided to American Indians?
Mim Dixon, Consultant for Mim Dixon and Associates, urged Indian communities seeking to establish long-term care systems to access Medicaid funding to help pay for services. As Dr. Dixon noted, Federal guidelines enable each state to determine, within limits set by the Federal government, who is eligible for Medicaid, what services are covered, and the circumstances in which a particular service is provided to an individual. Although Federal guidelines do require that:
- State Medicaid programs cover:
- Skilled nursing facilities.
- Home health aides.
- Medical supplies.
- Medical equipment.
- States may choose to cover:
- Personal care services.
- Physical therapy.
- Occupational therapy.
- Speech pathology.
- Private duty nursing.
In addition, States may obtain a Home and Community Based Services Waiver (also referred to as a 1915(c) waiver) that enables them to cover the following services to people who would otherwise require nursing home care:
- Case management.
- Home health aide services.
- Homemaker services.
- Personal care services.
- Adult day health, habilitation, and respite care.
- Home modifications.
- Vehicle modifications.
- Assisted living.
- Chore services.
In their waiver application, States define the population that will be eligible for the waiver and what services the waiver will cover, as well as, the maximum number of people the waiver will serve. Total costs under the waiver may not exceed the total cost of covering waiver participants without the waiver. Finally, States can limit a waiver to a geographical area(s) within a State, such as a reservation.
Dr. Dixon reported that Medicaid is already paying for some tribally operated long-term care services (e.g., 12 tribally operated nursing homes, Cherokee Nation home health services). Tribes, however, might not be receiving Medicaid reimbursement for a number of services that would be eligible for reimbursement. This may be due to a variety of reasons. For example, Tribal providers may not meet Medicaid requirements; they may not have enough of the right types of staff; or may not want to serve all people in a geographic area, as some States require. Or, tribes may not have a system for billing for services. Finally, eligible elders may not join the Medicaid program. One study found that 35 percent of American Indians/Alaskan Natives who are eligible for Medicaid are not receiving it. Dr. Dixon believes that States and tribes could work together to resolve some of these issues but that the Federal government might need to foster these relationships in some States, especially during these times of State budget crisis.
Return to Overview
How can personal care services be provided?
Dr. Wallace of the UCLA Center for Health Policy Research elaborated on the information provided by Dr. Dixon about the provision of personal care services under Medicaid. He informed workshop participants that States can choose to provide personal care services either through the standard Medicaid program, a 1915(c) Home and Community Based Services waiver or both. The waiver offers more flexibility in coverage and design of services than the standard Medicaid program, but waiver costs (unlike standard Medicaid costs) are capped. Further, personal care services may be available under consumer direction or agency models:
- In the agency model, services are provided by an agency. Medicaid pays the agency and the agency hires, pays, and supervises the home care worker. Agencies typically have on call workers to provide care when the regular worker is unavailable.
- In the consumer-directed model, the elder or family acts as the employer and is responsible for hiring and training the worker and supervising care as the employer. In this model the Medicaid agency may pay the worker directly or through a fiscal agent or intermediary; however, the consumer is typically the employer of record under IRS regulations.
Anita Yuskauskas, Ph.D., Health Insurance Specialist in the CMS Disabled and Elderly Programs Group, reported on CMS initiatives to encourage the use of consumer-directed care. The CMS Independence Plus initiative (http://cms.hhs.gov/independenceplus/) is based on research that shows that consumers who are in control of their care are more satisfied with their care and report an improved quality of life, without an increase in program costs. The Initiative offers States guidance on what self directed care is, design options and methods for funding a home and community based self directed program, and the essential elements needed to safeguard the health and welfare of participants. Dr. Yuskauskas reported that CMS is in the process of developing a waiver template, a technical guide for States, and a resource kit as part of this initiative.
Ms. Bremner reported that the Blackfeet Tribe provided personal care services as an agency and served as the fiscal agent for a consumer-directed program. (A fiscal agent processes payments, but does not control the care.) She reported that in her experience both models could work well for those needing care but that many people want to be in charge of their own care and caregiver. From an agency point of view, Ms. Bremner preferred the consumer-directed program because it was easier to administer. The client identifies the worker, schedules the visits, and verifies the hours worked. She did find, however, that she sometimes needed to become involved when it appeared that the State-selected nurse reviewer did not authorize enough hours of care for an individual. She offered an example of a heart transplant patient who was authorized only two hours of care per day.
Return to Overview
How can tribes and States work together to meet American Indian long-term care needs?
State polices can greatly influence a tribe's ability to meet its members long-term care needs. Dr. Dixon identified some of the barriers to effective collaborations between tribes and States. These include a lack of knowledge about why they need to collaborate and how to do so effectively.
Linda Wright, Director of the North Dakota Department of Human Services' Aging Services Division, Arlene Olney, Director of Human Services for the Yakama Nation Area Agency on Aging, and Frederick Baker, Chairman of the Board of Directors of the Mandan, Hidatsa, Arikara Elder's Organization, elaborated on these barriers, which include:
- Turnover: It takes time to build trust and relationships, and turnover, at either the tribe or the State, may mean having to rebuild these connections.
- Politics: Tribal, State, Federal, and county politics may get in the way of forging effective working relationships.
- Institutional bias: Medicaid funding favors nursing homes over community care. (States don't need a waiver to provide nursing home services, but they do to provide some types of community care).
- Funding limitations: Due to current State budget problems enrollment in some programs that benefit American Indians has been halted and funding for some programs has been frozen. This is very hard because people still need services, and it can make the State look unreliable as a working partner.
Despite these barriers, some examples of effective partnerships do exist, such as those in North Dakota and Washington State. These were examined at the workshop. Ms. Wright, Ms. Olney, and Mr. Baker, identified some specific things that have been accomplished in each State:
The State and tribes in North Dakota have jointly held an aging conference for tribal elders, entered into agreements for the state to fund adult protective services workers, and held input forums on the State Plan on Aging on every reservation.
North Dakota has specified that tribal organizations can be providers of home and community based services, passed specific legislation authorizing a nursing home for Turtle Mountain despite a moratorium on new nursing homes within the State, and sets aside a portion of its their Title III money for American Indian communities.
Washington State has established a policy where State staff do not enter tribal members' homes without the presence of a tribal representative. This has not only resulted in better interactions with potential clients and better outcomes for the client, but also better working relationships. The State and tribes have also collaborated to hold a conference on elder housing, Title VI, elder abuse, and kinship care.
All three speakers reported that developing effective collaborations required a willingness on the part of both the State and the tribes to do so. Dr. Dixon's earlier remarks emphasized that States are required to consult tribes when developing any waiver request. Consultation provides an opportunity for tribes and States to begin to work together, but she believed that the Federal government will, in some cases, need to use their waiver approval authority to facilitate engagement in the process.
Other suggestions for overcoming barriers to collaboration include:
Integrate structures into State governments that promote communication and understanding between the tribes and the State. North Dakota, for example, established an Indian Affairs Commission (www.health.state.nd.us/ndiac/) which serves as a link between tribes and the State, invites a tribal chairperson (selected by his/her fellow chairs) to address the State legislature each year, and requires employees to complete cultural competency training with a focus on American Indians.
Washington State has established an Office of Indian Affairs. It has also signed a Centennial Accord with all the tribes in the State that formalizes the relationship among the governments and requires a number of State agencies, including the Department of Health and Social Services, to develop plans for operating under the Accord (www.goia.wa.gov).
Encourage and support elders to advocate on their own behalf. For example, helping elders to better understand health issues and their ability to influence State government, as well as, providing transportation or reimbursing mileage for attending meetings, can help elders make their voices heard.
Partner with other groups that have similar needs and goals. For example, reservations and other rural areas have many issues in common. Also, those running Area Agencies on Aging (AAAs) have issues in common, so joining a State association of AAA Directors can bring benefits.
Tribal members who have experience working in State government or who are currently serving in State government positions can become effective tribal representatives because they are familiar with State policies and, how State programs work and are likely to already have working relationships with State staff.
Finally, all presenters emphasized that tribes should pay attention to State politics and take (or make) opportunities to educate the legislature and other State staff about elders' needs. It is important to attend meetings, conferences, and training not only to learn about changes in State policies but also to become known as a source of information and develop a working relationship so American Indian elders' needs are not "forgotten" in State policies and programs. Developing effective collaborations requires both Tribal and State representatives to be part of finding solutions to problems.
Return to Overview
Finke B. Long-term care in American Indian country today: A snapshot. American Indian and Alaska Native Roundtable on Long-term Care: Final Report 2002. Seattle (WA): Kaufman and Associates Incorporated.
Special Committee on Aging United States Senate. Developments in aging: 1997 and 1998, Vol. 1, Report 106 229. Washington (DC): 2000 Feb.
Current as of July 2003
Previous Section Contents
Improving Long-term Care for American Indians in Region VIII. Workshop Brief, User Liaison Program, July 21-23, 2003. Agency for Healthcare Research and Quality, Rockville, MD. http://www.ahrq.gov/news/ulp/amindltc/ulpailtc.htm