The COVID-19 pandemic has laid bare the severe public health danger that institutional and congregate care settings pose to people with disabilities, older adults, and the care professionals who work in those settings. As of August 2020, over forty percent of all COVID-19 deaths in the United States were linked to nursing homes and other long-term care facilities.
By November 2020, over 100,000 residents and staff at long-term care facilities had died of the virus.
Some observers referred to such institutions during the pandemic as “death pits” and the public health crisis in institutions as a “human tragedy.”
While the known death counts in institutions serving people with disabilities and older adults are horrific enough, the full magnitude of the virus’s devastation in such settings is unknown because there is no nationwide, comprehensive dataset available on COVID-19 cases and deaths across all congregate care settings, including those that primarily serve people with disabilities.
A tragedy of this magnitude among people with disabilities and older adults was not inevitable. Even holding constant the rampant spread of the virus in the United States as a whole, infection and death rates among people with disabilities and older adults could have been far more limited if this population had broader access to home and community-based services (HCBS). HCBS offer a cheaper and typically preferred alternative to institutionalization, allowing people with disabilities and older adults to live safely with the services they need in their own homes and communities.
In the context of the pandemic, HCBS can help individuals avoid many of the health risks of institutions, where social distancing is difficult or impossible and various protocols proved insufficient to stem the increases in COVID-19 infections before vaccines became available.
The Americans with Disabilities Act (ADA) named isolation and segregation as forms of unlawful discrimination, and its “integration regulation” declared that individuals have a right to services in the most integrated setting appropriate to their needs.
An additional regulation, however, requires states and other public entities to “make reasonable modifications” to avoid “discrimination on the basis of disability” but does not require measures that would “fundamentally alter” the nature of the entity’s programs.
Unfortunately, existing judicial interpretations of the right to community-based services under the ADA have created a standard for the fundamental alteration defense that is too deferential to states, fails to fully protect individuals’ right to services in an integrated setting, and does not account for the public health risks of institutionalization.
In its 1999 Olmstead decision, the Supreme Court answered the question of whether people with disabilities must be provided the option of services in the community rather than in institutions with “a qualified yes.”
The Court ruled that the state’s responsibility is “not boundless”
and the fundamental alteration defense could apply if a state can show that it has an “effectively working plan” for deinstitutionalization and a “waiting list [for HCBS] that move[s] at a reasonable pace.”
As a result of the Olmstead decision, subsequent circuit and district court interpretations of Olmstead’s fundamental alteration framework,
and interpretations of certain provisions of the Medicaid statute,
states are still allowed to limit the number of people who can receive Medicaid HCBS at a time. This is in contrast to Medicaid institutional services, which states must provide to all individuals who qualify.
Consequently, the majority of states maintain long waiting lists for HCBS—over 800,000 Americans are on Medicaid HCBS waiting lists and the average wait time for services is thirty-nine months.
Many individuals have few options other than institutionalization to access the services they need.
Over two decades after Olmstead, it is clear that the right to integration has not been fully realized.
The problem of institutionalization and the slow pace of deinstitutionalization efforts under the ADA, at a broad level, is not new. Other scholars have proposed a variety of legal solutions to this problem before COVID-19.
Yet prior to the COVID-19 pandemic, arguments for deinstitutionalization largely focused on how unwanted and unjustified institutionalization harms people by preventing them from living independently, making basic decisions in their everyday lives, and fully participating in their communities.
While the public health risks of institutions have always existed, few people paid attention to these risks prior to COVID-19 despite warnings from some researchers and advocates about the frequency and severity of infectious disease outbreaks in institutions.
But because of its larger scale and publicity, the COVID-19 pandemic provides new, impossible-to-ignore evidence that unjustified institutionalization is not only discriminatory but also dangerous to the health and lives of people with disabilities and older adults.
This Note suggests that the COVID-19 experience offers a new basis on which to clarify and strengthen existing interpretations of the Olmstead fundamental alteration framework. It is the first analysis to address the inconsistency between courts’ interpretations of this framework and the reality of what an “effectively working plan” or “waiting list that move[s] at a reasonable pace”
would actually look like in the context of the public health risks in institutions. In light of the new evidence that the COVID-19 pandemic provides on these risks, this Note argues that the Department of Justice (DOJ) should use its regulatory authority over the ADA to promulgate new regulations that clarify and strengthen the fundamental alteration standards in order to broaden access to Medicaid HCBS.
Part I describes the current public health crisis in institutions and other congregate care settings, which is more apparent than ever during COVID-19 but has long been a risk of institutionalization in the United States. It also provides background on why and how the Medicaid statute and regulations limit access to HCBS and leave many people with few alternatives to institutionalization. Part II explores the legal structures that failed to prevent the COVID-19 crisis in institutions. It explains the statutory and regulatory framework for the right to services in an integrated setting, describes judicial interpretations of the right to services in an integrated setting, and argues that the COVID-19 crisis exposes the Olmstead fundamental alteration framework’s failure to account for the public health risks of institutionalization. Part III argues that a regulatory approach to strengthening the fundamental alteration framework is superior to attempting to do so through litigation because of agencies’ authority, expertise, and motivation on this issue, especially in the Biden Administration. It also proposes substantive ideas for regulations that DOJ might consider for strengthening each of the fundamental alteration framework elements, such as requiring separate analyses for the “effectively working plan” and “reasonable pace” elements and devising a formula for calculating whether the pace of waiting list movement is “reasonable” in any given state or program.