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Improving Long-term Care for American Indians in Region VIII

Introduction

Presenters:

Christine Williams, M.Ed., Director, Office of Health Care Information, Agency for Healthcare Research and Quality, Rockville, MD.

June Tatsey, M.Ed., Tribal Health Administrator, Blackfeet Health Department, Browning, MT.


Before discussing the long-term care needs of American Indians in Region VIII, it is necessary to have a common understanding of what long-term care is, who needs it, and who pays for it. It is also important to have some knowledge about the delivery of long-term care to American Indians in Region VIII.

What is long-term care?

Long-term care includes an array of health, personal, social, supportive, and specialized housing services needed by individuals who have lost some capacity for self care. Services include:

  • Personal assistance.
  • Home health aide services.
  • Homemaker care.
  • Skilled nursing.
  • Home-delivered meals.
  • Home modifications.
  • Adult family care.
  • Transportation.
  • Meal preparation.
  • Shopping.
  • Assistance with medications.
  • Adult day care.
  • Respite services.
  • Other caregiver supports.

Much of this care is provided by informal caregivers (families and friends). Christine Williams, Director of AHRQ's Office of Health Care Information, noted that one study has found that 80 percent of long-term care is provided by informal caregivers.

Services can be delivered in a range of settings:

  • A person's home.
  • Community settings.
  • Housing with supportive services.
  • Assisted living facilities.
  • Institutions.

The goals of long-term care are to:

  • Maintain an optimal level of functioning.
  • Enhance social and psychological well being.
  • Maximize individual independence and autonomy.
  • Permit individuals to live in the least restrictive settings possible.
  • Promote a meaningful life.

Return to Overview

Who needs long-term care and what services do they need?

According to Ms. Williams, older Americans, as a group, are becoming more diverse, living longer, and increasing in numbers. The sheer increase in numbers will strain the existing long-term care system. The changing demographics of the elderly population will add to that strain. Rates of disability are higher among racial/ethnic minorities, who comprise a growing percentage of the elderly, and the need for long-term care services increases with age; those over 85 have a greater need for these services than those age 65 to 85.

It is important to remember, however, that elders are not the only people who need long-term care, that not all elders need such care, and that few of those who do need long-term care need to be in a nursing home. Only 57 percent of those with long-term care needs are over 65 years of age (17 percent of the total elderly population); 40 percent are between 18 and 64. And only 5 percent of the elderly with long-term care needs are in nursing homes.

The mix of long-term care services that an individual receives is defined by that person's specific needs. There are two major methods for identifying individual needs. These are:

  1. Assessing an individual's need for assistance with Activities of Daily Living (ADLs):
    • Eating.
    • Bathing.
    • Dressing.
    • Toiletting.
    • Transferring.
  2. Assessing an individual's need for assistance with Instrumental Activities of Daily Living (IADLs):
    • Meal preparation.
    • Shopping.
    • Managing money.
    • Other routine activities.

Ms. Williams noted that 81 percent of those needing help with ADLs or IADLs live in the community. Unfortunately, 37 percent of the ADL-impaired elderly in the community need additional assistance or are not receiving help at all.

Return to Overview

Who pays for long-term care?

Long-term care is paid for by a patchwork of private and public funding, which includes Medicaid, Medicare, Indian Health Services, Administration on Aging, tribal, and personal resources. Medicaid, however, is the primary source of public funding. Since Medicaid is a State/Federal partnership that is administered by each State, who qualifies for the program and which services are covered varies widely among States. In recent years, many States have made efforts to shift care delivery from nursing homes to the community. Now, 31 percent of the money Medicaid programs spend to provide long-term care are spent on home- and community-based services.

Return to Overview

How are long-term care services delivered to American Indians in Region VIII?

June Tatsey, Tribal Health Administrator for the Blackfeet Health Department, related how long-term care on the Blackfeet reservation has changed over the years. When she was young, elders on the Blackfeet reservation received care from friends and relatives, and this care was not thought of as long-term care. Those who needed more extensive care often were placed in off-reservation nursing homes, far from familiar people and surroundings. The first long-term care service established by the Blackfeet tribe was a nursing home so that those who needed such care could remain close to friends and family. Since that time, the tribe has added other services, many designed to keep people with long-term care needs in their own homes. Although services are available on the Blackfeet reservation, significant barriers to access exist and include:

  • The Blackfeet reservation is very rural. People have to travel a long distance to either receive or provide care—often over poor roads or in bad weather.
  • Changes in the way people live, such as more working mothers, are making it more difficult for friends and family to provide informal care.
  • People are often not aware of the programs and services offered or how to apply for them.

Ms. Tatsey also offered some observations about designing long-term care systems that meet American Indian needs:

  • Elders need to be consulted in the design of the system and the system needs to respect their culture and traditional healing.
  • Tribes need to be consulted in the design of Federal or State programs.
  • Tribes need direct funding (not through States) to develop systems to maintain the government to government relationship of tribes with the Federal government and to prevent changes in programs at the State level from affecting the services delivered by tribes.

Return to Overview


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