Abstract:
Many lawyers and advocates look to the law as the tool to effectuate change, especially for the betterment of historically marginalized groups. There are countless examples of the law serving as a tool to combat discrimination, from legal challenges to segregation by the civil rights movement, to the passage of the Americans with Disabilities Act (ADA). But racism, ableism, and ageism limit the legal rights for marginalized communities. This article will identify the law’s limitations and its impact on older adults, people with disabilities, and communities of color, and will identify the ways it can be utilized to combat those inequities.
Key Words:
advocacy, ageism, ableism, discrimination, legal, racism
Historically marginalized communities often rely upon the law to protect their civil rights. While there are many examples of the law expanding rights for various communities, several problems and inequities remain embedded in our legal system. Statutory policies like Medicaid’s institutional bias limit autonomy by essentially forcing older adults and people with disabilities into institutional long-term care. Meanwhile, Medicaid estate recovery perpetuates intergenerational poverty for communities of color that relied upon Medicaid to provide essential care. Finally, the courts play a significant role in protecting individual rights, although some of those protections may be at risk as the judiciary changes. Nonetheless, the law can still be leveraged to ensure equitable access to crucial care.
Limitations of the Law
Historical Inequities Around Age, Race, and Disability Are Baked Into the Law
Medicaid and Medicare were enacted in 1965 as part of the Social Security Act. Both programs cover older adults and people with disabilities, but the services offered are inherently institutional and offer limited options for people to receive long-term care outside of facilities. The only guaranteed long-term care coverage for most individuals is institutional Medicaid, because Medicare only provides 100 days of nursing home coverage following a three-day inpatient hospitalization. While every state offers Home and Community-Based Services (HCBS), it is an optional benefit, resulting in great variability in how people can access these services. States use a maze of waivers that vary drastically in the type of services covered, the number of people covered, and potentially the quality of services. These variations occur between states and even within the same state, as Medicaid waivers can, and often do, differ across Medicaid populations.
There also are delays in receiving services for optional benefits like HCBS. For example, older adults and people with disabilities often remain on waiting lists for HCBS coverage to begin because insufficient funding leads to a reduced number of slots. The limited data we have on HCBS shows tens of thousands of people across dozens of states are on these waiting lists (Burns et al., 2022). Further, this data does not capture individuals who have not applied for HCBS because of the many obstacles and wait times, making the number of individuals eligible for services likely even higher.
Meanwhile, coverage for institutions such as nursing homes is required under Medicaid, which means they avoid the complexities of waivers and waiting lists. This disparity creates an institutional bias whereby the law, specifically the Medicaid statute, effectively pushes older adults and people with disabilities into nursing homes as their only guaranteed option for long-term care services. The institutional bias contradicts most people’s wishes to receive services in their homes and adds fuel to the fears of many in the disability and aging communities of ending up in a facility.
The institutional bias in the Medicaid statute makes institutionalization the “standard” for long-term care, despite being the least popular option, effectively codifying existing ableist and ageist views that older adults and people with disabilities are not capable of and do not deserve autonomy or community integration (Kilaru & Gee, 2020).
Institutional bias contradicts most people’s wishes to receive services at home and fuels the fears of many in the disability and aging communities of ending up in a facility.
Further, racial disparities occur even among institutionalized nursing home residents. Residents of color are more likely to be placed in lower quality nursing facilities with higher rates of infections, hospitalizations, and pressure sores (Carlson & Selassie, 2022). These disparities occur even after accounting for socioeconomic status, geography, and payment source. One study found facilities with predominantly Black and Hispanic residents had 34% and 60% fewer registered nurses, respectively, than facilities that were majority White, even after factoring in insurance, geography, and underlying medical conditions (Lowenstein, 2014). Residents of color in low-quality nursing facilities could receive higher quality care in the community if the institutional bias were eliminated and HCBS became more available.
Another major inequity occurs in Medicaid via estate recovery, under which states are required to recover the costs associated with a deceased individual’s Medicaid long term–care expenses. While there are some limited exemptions, for most beneficiaries, estate recovery perpetuates poverty for future generations by eliminating modest assets, like a family home, from their inheritance. Communities of color in particular are greatly harmed by estate recovery in part because avoiding it requires complicated and costly Medicaid estate planning (Medicaid and CHIP Payment Access Commission [MACPAC], 2021).
Further, states are required to undergo estate recovery even if the procedural costs are greater than the value of the estate. In practice, estate recovery can serve as a punitive system, punishing families for needing Medicaid for long-term care. Therefore, while Medicaid is a crucial program for older adults and people with disabilities, the institutional bias and estate recovery mandate worsen inequities, particularly for those living at the intersection or race, advanced age, and disability.
The Power of Law
Nursing Home Reform Law
In 1987 Congress passed the Nursing Home Reform Act (NHRA, 1987) following reports that people with disabilities and older adults were receiving inadequate care in facilities, in addition to suffering widespread neglect and abuse.
The NHRA was significant in expanding rights and protections for residents, including the creation of the Resident’s Bill of Rights. The Resident’s Bill of Rights lists various protections to which residents are entitled, including freedom from abuse or restraints, the right to exercise self-determination and participate in their own care plan, and the right to voice grievances without retribution (Resident Rights, 2022). These protections refute ageist and ableist notions of long-term care users by guaranteeing nursing home residents the rights they would be entitled to outside the facility.
There are also racial equity considerations because people of color have increasingly entered nursing homes since the NHRA was passed (Feng et al., 2011). Protecting and strengthening the protections under the NHRA is especially crucial to ensure residents of color are not further discriminated against after a lifetime of systemic discrimination, which often can result in poorer health outcomes and more limited access to quality long-term care (Doty et al., 2022). Although disparities remain prevalent, the NHRA provides federal agencies the authority to enact regulations to remove these disparities and create a more equitable long term–care system.
The Role of the Courts
Public benefits programs upon which older adults rely, such as Medicare and Medicaid, are subject to constitutional due process requirements. In 1970, the Supreme Court in Goldberg v. Kelly established that the Fourteenth Amendment’s Due Process Clause requires advance notice and the opportunity for a hearing, before the termination of benefits. The Court found that government benefits, like nutritional services, financial assistance, and government healthcare programs were statutory entitlements, not mere “privileges,” and the loss of these crucial services would result in significant harm and deprivation of beneficiaries’ property interests (Goldberg v. Kelly, 1970). Goldberg played a monumental role in protecting benefits that older adults and people with disabilities particularly rely upon and greatly advanced civil legal advocacy for indigent populations.
While Goldberg outlined clear due process requirements with respect to government benefits, another more recent U.S. Supreme Court case could have significantly limited the rights of enrollees. The issue in Health & Hospital Corporation of Marion County (HHC) v. Talevski (2023) centered on whether the plaintiff could sue under a civil rights statute (Civil Action for Deprivation of Rights, 2015; also known as “Section 1983”) for violations of the Federal Nursing Home Reform Act (FNHRA).
Section 1983 allows individuals to bring a civil action when their civil or constitutional rights have been violated. Section 1983 is significant because most statutes, including the FNHRA and Medicaid statute, do not explicitly confer a private right of action, leaving individuals limited to either the administrative appeals process or recourse under Section 1983. Advocates were concerned that the Court would not only find that Section 1983 does not apply to the FNHRA, but also that Section 1983 may not be used for many statutes passed by Congress using their authority under the Spending Clause of the Constitution (Rudowitz & Sobel, 2022).
‘Most older adults and people with disabilities are institutionalized at higher rates than other Medicaid populations.’
Congress passes many laws under its Spending Clause authority, like Social Security, Medicaid, Medicare, and the Supplemental Nutrition Assistance Program. Such a decision would mean individuals could only use an administrative process to address a civil or constitutional violation, significantly limiting their avenues for recourse. Fortunately, the Court upheld decades of precedent and recognized that the FNHRA unambiguously confers rights enforceable under Section 1983. While this decision was favorable for older adults, people with disabilities, and other individuals who rely upon the courts to protect their rights, there is still a risk that future cases may weaken Section 1983 for other federal statutes.
Justice Barrett in her concurring opinion stated that Section 1983 enforcement sets a “high bar” in which the statute must confer “explicit rights-creating terms” for an individual “[and] although the FNHRA clears [the high bar], many federal statutes will not” (Health and Hospital Corp. of Marion County v. Talevski, 2023). Justice Barrett’s hint potentially sets up future battles over the applicability of Section 1983 to other statutes.
Olmstead v. L.C. and Rebalancing Initiatives
As stated above, Medicaid only requires coverage for institutional Long-Term Services and Supports (LTSS). In the decades since Medicaid was passed, states increasingly began using their waiver authority to cover HCBS for specific populations. These HCBS waivers provide an alternative to institutionalization and “rebalanced” Medicaid dollars away from institutions into more integrated community settings. Rebalancing ramped up significantly following the 1999 case, Olmstead v. L.C. The U.S. Supreme Court ruled that “unjustified isolation” due to institutional placement violated the Americans with Disabilities Act and that people with disabilities have the right to live and receive services in “the setting that is least restrictive” (Olmstead v. L.C., 1999).
Following Olmstead, the use of HCBS expanded drastically to cover more populations. In 1988 only 10% of LTSS spending went to HCBS, compared to 56% in 2018 (Centers for Medicare and Medicaid Services, 2021). While this is a positive move, there are still limitations. For example, some waiver populations, like older adults and people with physical disabilities, receive less than 50% LTSS spending on HCBS (MACPAC, 2019). This strongly suggests that most older adults and people with disabilities are institutionalized at higher rates than other Medicaid populations. Nonetheless, the Olmstead decision and subsequent rebalancing initiatives significantly expanded the rights of Medicaid LTSS beneficiaries to receive care in the community and can be leveraged to advance efforts to eliminate the institutional bias.
How the Law Can Fight Structural Discrimination
Equitable Reforms to LTSS
While the NHRA has gone a long way to protect residents, more efforts are needed to improve the quality of nursing facilities, with a focus on implementing equitable policies to alleviate racial disparities in nursing facility care. Compared to facilities with majority White residents, facilities with majority Black or Hispanic residents face lower staffing levels resulting in significantly worse health outcomes, and increased mortality rates (Harrington et al., 2020).
Improving staffing levels would improve health outcomes for all residents but will have a greater impact on residents of color as they are more likely to reside in facilities that are grossly understaffed. Fortunately, some efforts are underway to improve nursing home staffing, as the Centers for Medicare and Medicaid Services is expected to issue a Notice of Proposed Rulemaking (NPRM) on minimum staffing levels this year.
Additionally, making HCBS a mandatory benefit would eliminate the institutional bias and the confusing patchwork of HCBS waivers, allowing older adults and people with disabilities to have a meaningful choice on how they receive long-term care. Developing an equitable HCBS system also means addressing issues that prevent access to HCBS, including the lack of accessible and affordable housing, reliable transportation, and a high-quality direct care workforce. Improving coordination across service providers, investing in the direct care workforce, and greater access to affordable housing are necessary to provide a meaningful and equitable HCBS infrastructure.
‘Eliminating estate recovery would give communities of color the opportunity to maintain intergenerational wealth.’
Data on HCBS currently is very limited, although initial findings suggest that some populations have less access to HCBS. For example, in Wayne County, MI, where Detroit is located, 40% of older adults are people of color, yet they have disproportionately fewer HCBS waivers slots compared to more rural counties and counties with more White residents (Christ & Kean, 2023). State and federal policymakers should review HCBS use to ensure equity in all stages.
Lastly, eliminating estate recovery would give communities of color the opportunity to maintain intergenerational wealth by allowing the deceased individual’s beneficiaries the opportunity to inherit modest estates. At a minimum, states should exempt estates of modest value and expand hardship exemptions for families that would be impoverished or homeless should recovery occur. Further, LTSS users may be more willing to receive LTSS if estate recovery is eliminated, as the risk of recovery may have a chilling effect, preventing individuals from even applying for Medicaid (MACPAC, 2021).
A Final Legal Tool: Robust Anti-Discrimination Protections
One final example of the power of law to fight structural discrimination is through robust anti-discrimination protections. This is important both because of the racism, ableism, and ageism deeply embedded in the history of the programs and services for older adults and people with disabilities, but also because the present-day reality is that the impact of the programs and services is inequitable.
Older adults and people with disabilities must have unobstructed, timely, and meaningful access to legal remedies that combat discrimination in real time. This includes the availability of an intersectional private right of action to challenge such discrimination and the recognition of “disparate impact theory” in legal jurisprudence. Unfortunately, the legal landscape is complex and fractured.
As discussed earlier with regard to Talevski, a private right of action is invaluable because it allows the individual who experienced discrimination an opportunity to challenge that by enforcing their rights in court. Our patchwork of civil rights laws has resulted in the availability of private rights of action in some instances, but not others. For example, a private right of action is available under the ADA for discrimination by private entities that provide public accommodations or operate commercial facilities. However, as a result of Supreme Court decisions interpreting Title VI’s prohibition on racial discrimination, individuals do not have a private right of action in that context.
The limited availability of a private right of action poses challenges to combating discrimination. The impacts of discrimination to an individual—loss of dignity and humiliation and disproportionate rates of poverty and poorer health outcomes—are pernicious regardless of the protected class in question. As the nature of discrimination evolves, it can become increasingly difficult to ascertain—short of an explicit statement or action—a perpetrator’s motives, so the law must evolve to account for the ways discrimination has changed. In addition, as an intersectional understanding of discrimination takes hold (i.e., discrimination on the basis of multiple protected identities), the patchwork does not work because inconsistencies between statutes pose challenges for courts, older adults, and people with disabilities to decipher.
The difficulty in ascertaining discriminatory intent also confirms the importance of recognizing disparate impact theory in the law. Disparate impact does not require individuals who have experienced discrimination to prove discriminatory intent, but rather, that the challenged policy or practice has the effect of discriminating, even if the means are facially neutral. Disparate impact more accurately reflects the ways in which systems, policies, and programs have been susceptible to discrimination; structural discrimination has been so deeply entrenched over such a long period of time that even facially neutral means can and do lead to inequitable outcomes.
For example, a HCBS waiver program that limits slots based upon geography may do so through facially neutral means but could result in people of color having less access because there are fewer waiver slots available in populous areas where communities of color reside. Disparate impact recognizes that as a society, the ways in which discrimination occurs have evolved from the explicit “smoking gun” that may have been more commonplace during the era of the civil rights movement, moving the focus away from individual actors to emphasize systems thinking and structures.
The law has historically played a significant role in protecting individuals from discrimination, giving them access to a court to hear their issue. These values of fairness are underscored in Talevski and Goldberg. However, for the full power of law to be maximally leveraged to advance equity and protect individuals from discrimination, a patchwork approach is insufficient. Instead, as the nature of discrimination evolves and becomes more implicit, robust anti-discrimination protections like intersectional private rights of action and disparate impact theory must be leveraged.
Gelila Selassie, JD, is a senior attorney at Justice in Aging, based in Washington, DC. Denny Chan, JD, is the managing director of Equity Advocacy at Justice in Aging, based in the greater Sacramento area.
Photo credit: Illus_man
References
Burns, A., O’Malley Watts, M., & Ammula, M. (2022, November 28). A look at waiting lists for home and community-based services from 2016 to 2021. Kaiser Family Foundation https://www.kff.org/medicaid/issue-brief/a-look-at-waiting-lists-for-home-and-community-based-services-from-2016-to-2021/
Carlson, E., & Selassie, G. (2022, September). Racial disparities in nursing facilities—and how to address them. Justice in Aging. https://justiceinaging.org/wp-content/uploads/2022/09/Racial-Disparities-in-Nursing-Facilities.pdf
Centers for Medicare and Medicare Services (CMS). (2021, January 7). Medicaid Long Term Services and Supports Annual Expenditures Report: Federal fiscal years 2017 and 2018. http://www.medicaid.gov/sites/default/files/2021-01/ltssexpenditures-2017-2018.pdf
Christ, A., & Kean, N. (2023, June). An equity framework for evaluating and improving Medicaid Home and Community-Based Services. Justice in Aging. https://justiceinaging.org/wp-content/uploads/2023/06/An-Equity-Framework-for-Evaluating-and-Improving-Medicaid-HCBS.pdf Civil Action for Deprivation of Rights, 42 U.S.C. § 1983 (2015), https://www.law.cornell.edu/uscode/text/42/1983
Doty, M. M., Horstman, C., Shah, A., Ayo-Vaughan, M., & Zephyrin, L. C. (2022, April 21). How discrimination in health care affects older Americans, and what health systems and provider can do. The Commonwealth Fund. https://www.commonwealthfund.org/publications/issue-briefs/2022/apr/how-discrimination-in-health-care-affects-older-americans
Feng, Z., Fennell, M. L., Tyler, D. A., Clark, M. & Mor, V. (2011) Growth of racial and ethnic minorities in US nursing homes driven by demographics and possible disparities in options. Health Affairs 30(7). https://doi.org/10.1377/hlthaff.2011.0126
Goldberg v. Kelly, 90 S. Ct. 1011 (1970).
Harrington, C., Dellefield, M. E., Halifax, E., Fleming, M. L., & Bakerjian, D. (2020). Appropriate nurse staffing levels for U.S. nursing homes. Health Services Insights, 13, 1178632920934785. https://doi.org/10.1177/1178632920934785
Health and Hospital Corp. of Marion County v. Talevski, 143 S. Ct. 1444 (2023).
Institute of Medicine. (1986). Improving the quality of care in nursing homes. The National Academies Press. https://doi.org/10.17226/646
Kilaru, A. S., & Gee, R. E. (2020). Structural ageism and the health of older adults. JAMA Health Forum, 1(10), e201249. https://doi.org/10.1001/jamahealthforum.2020.1249
Lowenstein, J. K. (2014, November 17). Nursing homes serving minorities offering less care than those housing Whites. Center for Public Integrity. https://publicintegrity.org/health/nursing-homes-serving-minorities-offering-less-care-than-those-housing-whites/?gclid=EAIaIQobChMI3eCvpZm-gAMVwwitBh3WNQyeEAAYASAAEgLP8_D_BwE
Medicaid and CHIP Payment Access Commission. (2019, July). Twenty Years Later: Implications of Olmstead v. L.C. on Medicaid’s Role in Providing Long-Term Services and Supports. https://www.macpac.gov/wp-content/uploads/2019/07/Twenty-Years-Later-Implications-of-Olmstead-on-Medicaids-Role-in-LTSS.pdf at p. 6.
Medicaid and CHIP Payment Access Commission. (2021, March). Chapter 3: Medicaid Estate Recovery: improving policy and promoting equity. https://www.macpac.gov/wp-content/uploads/2021/03/Chapter-3-Medicaid-Estate-Recovery-Improving-Policy-and-Promoting-Equity.pdf
Nursing Home Reform Act, 42 U.S.C. §§ 1395i-3 (1987), https://www.law.cornell.edu/uscode/text/42/1395i-3
Olmstead v. L.C., 119 S. Ct. 2176 (1999) at 2185–2186.
Resident Rights, 42 C.F.R. § 483.10 (2022), https://www.law.cornell.edu/cfr/text/42/483.10
Rudowitz, R., & Sobel, L. (2022, October 28). What is at stake for Medicaid in Supreme Court case Health & Hospital Corp v. Talevksi? KFF. https://www.kff.org/policy-watch/what-is-at-stake-for-medicaid-in-supreme-court-case-health-hospital-corp-v-talevski/
