Concern for an Aging Rainbow.

The ongoing debate about "undercounts" in the United States census is a reminder that "race" is an embarrassing concept in Washington. Policymakers and politicians avoid using the term "race" in any way that would suggest that people of African, East Asian or Native American ancestry are fundamentally different from other Americans. The result is that Washington uses the term "ethnic minority," "multicultural" or even "people of color" to describe Americans who are not considered "white."

Yet calling race "ethnicity" or "culture" creates problems of its own. Many white Americans view themselves as part of an ethnic minority or an undervalued culture with special needs-Jewish-Americans, Arab-Americans, Eastern European immigrants, Appalachians, Cajuns and others experience prejudice without being "people of color." Another problem is that people can decide to some extent whether they are "of color." One reason why the U.S. population of Native Americans has skyrocketed in recent censuses is that thousands of Americans now recognize the tribal affiliation of a grandparent. At the same time, civil rights laws and regulations require the race of beneficiaries to be a factor when the government makes program and funding choices.

Policies affecting long-term care have not been greatly affected by this diversity issue because the population of very old Americans has been almost entirely of white, European descent. The Bureau of the Census estimates that approximately three million Americans were over 90 years old in March 2000 and, of these, fewer than 15% were either Hispanic or "people of color" (see table).

That percentage will not change rapidly during the next few decades. However, while more than 31 of the nearly 38 million Americans between the ages of 65 and 90 are of European or Middle East ancestry, that statistic also means that roughly six million older Americans identify themselves as "ethnic" minorities. Thus, within 20 years, several hundred thousand African-American, Asian-American and Hispanic Americans will join the ranks of the very elderly and require the services of a skilled nursing facility specializing in age-related conditions.

These changes, albeit slow, will create real differences in long-term care. For example, there is an increasing demand for service delivery in languages other than English. The types of health problems encountered also will change; for example, elderly Asian-American women appear to have high rates of undiagnosed clinical depression, while Type II diabetes and its complications are epidemic among Native American elderly. Resident care decision making will be affected because Native Americans, Asian-Americans and African-Americans all tend to involve family members in health choices to a larger extent than do other Americans. Moreover, these cultures all provide new challenges to effective marketing of long-term care services.

The most sweeping changes, however, might be driven by government and judicial interest in ensuring that minority elderly receive a fair share of long-term care resources. The federal government currently provides most of the funding for the survival of organizations that advocate for the interests of minority elderly, such as the National Asian Pacific Center on Aging (NAPCA) and the National Indian Council on Aging (NICOA). These groups have continued to perform important work in documenting the unmet needs and special concerns of elderly "of color." They have been especially important in pointing out the extent to which managed care and the concentration of nursing homes in urban areas fail to serve the needs of elderly who, for the first time, are living in isolation from traditional extended families.

Federal advocacy of a "fair share" of long-term care resources for minority elderly might place the federal government in conflict with state governments. For example, a 1997 survey on long-term care among Native Americans reported that "hospice care, adult day care, and respite care for caregivers are rarely available" and that most reservations lack skilled nursing facilities.

The federal government has been theoretically responsible for healthcare for Native Americans since 1921, but Congress meets this obligation through an annual appropriation process from which the Indian Health Service never emerges with enough resources to meet its goals. As a result, according to NICOA Executive Director Dave Baldridge, some tribes want to use gaming revenue to provide financial support for long-term care services. In South Dakota, however, a 10-year-old moratorium on the creation of new long-term care facilities means that the tribes cannot use their own money to construct nursing homes on their ownland. From the federal perspective, the impasse in South Dakota might be discriminatory; from the state perspective, it is simply the result of a health planning regulation, a byproduct of which is that nursing homes operate exclusively in predominantly white communities.

Another problem encountered by Native Americans, and by other minorities facing an "explosion" of elderly in the near future, is the lack of expert assistance. The federal government does not have a program to help reservations or minority communities establish long-term care programs. Training in the management of assisted living facilities, adult day care or home healthcare usually occurs in on-the-job experience, which necessarily means experience obtained outside the minority communities. NICOA's Baldridge would like to see experience and training arrive on the reservations as part of a start-up program for Native American facilities, but states aren't eager to create more healthcare providers to tap into state Medicaid budgets.

African-Americans, Asian-Americans and Hispanic Americans face an assortment of similar institutional and financial barriers to obtaining a fair share of long-term care resources for their growing elderly populations. Although federal response to these problems is still meager, it at least represents a commitment that might be helpful to both the minority communities and the long-term care field. But it is a commitment that has some way to go.