A major public policy goal in the United States is "rebalancing" the long-term care system – reducing what was formerly, for many people, a near-total reliance on nursing facilities and increasing the use of home and community-based alternatives. While rebalancing has begun to change the long-term care system, its benefits have not been equally shared. Recent research indicates that older people who belong to minority groups are living in nursing homes in larger numbers than ever before, but partly because home and community-based alternatives are not available to them. There is a sense of irony and déjà vu in these findings. Thirty-five years ago, the underrepresentation of racial and ethnic minorities in nursing homes was a topic of concern and litigation challenged the racial steering of African-Americans into unlicensed boarding homes. Now, the patterns are reversed. White Americans are moving into assisted living facilities (which are not regulated by the federal government), and minorities are moving into nursing facilities.
The Growing Shift to Home and Community-Based Care
Many older people and people with disabilities who need long-term care services prefer non-institutional settings. Government payers like non-institutional services because they are less costly than nursing homes that are certified for participation in the Medicare or Medicaid programs, or both. The rebalancing movement, which brings together both sets of interests, has met with considerable success. Between 1995 and 2008, the percentage of Medicaid long-term care dollars spent on home and community-based services increased from 19% to 42%.[1] Medicaid remains the primary payer for care in nursing facilities.[2]
Minority Access to Long-Term Care Has Increased
Recent research regarding racial and ethnic minorities in nursing homes finds that between 1998 and 2008, the number of elderly Hispanic people living in nursing homes increased by 54.9%, the number of elderly Asians living in nursing homes increased by 54.1%, and the number of elderly African-Americans living in nursing homes increased by 10.8%.[3] During the same ten-year period, the number of White Americans living in nursing homes declined by 10.2%.
Using federal nursing home assessment data and census information, the researchers find that the number and percentage of minority group nursing home residents "grew at a considerably faster rate than the overall minority population between 1999 and 2008." In contrast, the number and percentage of white nursing home residents declined nationwide.
Changing demographics help explain the changing population of nursing homes. But the researchers also describe greater barriers to home and community-based alternatives for older people who are members of minority groups. Their analysis shows that older white Americans "may have more varied choices of care in the communities and may have been better able to afford alternatives to nursing homes such as assisted living facilities."
A cause of the disparities may be financial. Even though approximately 131,000 people living in assisted living use Medicaid home and community-based waivers to help pay for their stay, the vast majority of assisted living residents, 869,000, pay privately.[4]
Historic Concern With Race Discrimination In Nursing Homes
Thirty-five years ago, the public policy concern was racial discrimination in nursing homes. Senator Frank Moss and Val Halamandaris, in their 1977 book, Too Old, Too Sick, Too Bad, identified cost, social customs and language, and personal choice as three factors explaining minorities' under-representation in nursing homes, but concluded that race discrimination was the most important factor. Chapter 7 was entitled "No Vacancy for Minority Groups."
In 1977, the Department of Health Education and Welfare (the predecessor agency to the Department of Health and Human Services) reported that in 1969, white Medicaid beneficiaries used nursing home services at a rate five times greater than minority beneficiaries.[5] In contrast, in 1969, only 20% more was spent on in-patient hospital care for white Medicare beneficiaries than for racial minority Medicare beneficiaries.[6]
Litigation 30 years ago addressed racial discrimination against minorities in nursing homes. In 1980, elderly African-American residents of Shelby County, Tennessee filed a lawsuit challenging a racially dual-track system of long-term care. Hickman v. Fowinkle, C.A. No. 80-2014 (W.D. Tenn. Filed Jan. 11, 1980), alleged that elderly African-Americans were denied access to licensed Medicaid-approved nursing homes, which served mainly white Americans, and were instead placed in inferior unlicensed and unregulated boarding homes, which did not provide the level of care they needed. Plaintiffs alleged that they were placed in the boarding homes by their relatives after referral by the state Department of Human Services, although they were eligible for and needed nursing home care. They sued the Tennessee Departments of Human Services and Public Health along with twelve individually named nursing homes. A Consent Judgment, filed August 1, 1985, required the Tennessee Medicaid agency to conduct compliance and complaint reviews under Title VI of the Civil Rights Act and to promulgate waiting list regulations, enforcement regulations, and residential home regulations.
Conclusion
The good news in the new study is that members of racial minorities have better access to nursing home care, which in some cases is the only realistic long-term care option. The bad news is that disparities in access to non-institutional care may be a partial cause. The Affordable Care Act offers state Medicaid programs expanded options for providing non-institutional long-term care.[7] As advocates work with their states to implement these provisions, all parties involved should be attentive to promoting equity in access to these alternatives to institutionalization.
For more information, contact attorney Toby S. Edelman (tedelman@medicareadvocacy.org) in the Center for Medicare Advocacy's Washington, DC office at (202) 293-5760.
[1] Kaiser Family Foundation, http://kff.org/medicaid/upload/7720-04.pdf. (site visited July 25, 2011).
[2] Of the 1,394,212 residents as of June 2011, 884,876 (63%) use Medicaid; 200,589 (14%) use Medicare; and 308,747 (21%) use "other." American Health Care Association, LTC Stats: Nursing Facility Patient Characteristics Report, Table 2 (June 2011 Update) (information from CMS 672, F75-F78), http://www.ahcancal.org/research_data/oscar_data/NursingFacilityPatientCharacteristics/PatientCharacteristicsReport_Jun2011.pdf.
[3] Zhanlian Feng, Mary L. Fennell, Denise A. Tyler, Melissa Clark, and Vincent Mor, "Growth Of Racial And Ethnic Minorities In US Nursing Homes Driven By Demographics And Possible Disparities In Options," Health Affairs 30, No. 7 (2011): 1358-1365.
[4] National Center for Assisted Living, AssistedLiving StateRegulatory Review 2011 (March 2011), http://www.ahcancal.org/ncal/resources/Documents/2011AssistedLivingRegulatoryReview.pdf.
[5] Office of Health Resources Opportunity, Health Resources Administration, Public Health Service, DHEW, Health of the Disadvantaged (Chartbook) (Sep. 1977), page 59, Figure 85, http://www.eric.ed.gov/PDFS/ED147440.pdf.
[6] Id. page 60, Figure 88.
[7] Affordable Care Act, Pub. L. 111-148 (March 23, 2010) §§ 2401 et seq.