Disability Discrimination Law Applies to Medical Rationing Decisions: The Call for Emergency Planning in the ADA

Photo by Piron Guillaume on Unsplash.

Baylee Kalmbach, Associate Member, University of Cincinnati Law Review

I. Introduction

The Rehabilitation Act of 1973 was the first legal provision that protected people with disabilities from discrimination on the basis of their impairments,[1] and since then has pioneered paths for other legal and social justice opportunities for disabled populations. Recognizing that there was more work in store to protect people with disabilities from discrimination, the Americans with Disabilities Act (“ADA”) was passed in 1990.[2] It was later formally amended in 2008 to “overturn the Supreme Court’s restrictive interpretations of the definition of disability,” based on the original 1990 language.[3]

While both the Rehabilitation Act and ADA provide legal protections for people with disabilities in most spaces,[4] these translations into the enforcement and litigation processes are not always perfect. As current COVID-19 medical emergencies have become reality for the world at-large, scarce resources and allocation decisions reveal the threat of people with pre-existing disabilities not receiving life-saving treatments because of their impairments.[5] While the ADA does not explicitly prohibit medical rationing in favor of non-disabled people over their disabled counterparts, a proper interpretation of disability discrimination law will reveal that this practice violates the very civil protections that people within disability rights spaces have established and long been advocating for. Therefore, the ADA should be amended to address the discrepancies within the law and its enforcement. 

Part II will provide background on relevant disability discrimination law and outline two recent approaches to pandemic-related medical rationing. Part III will discuss the need for emergency planning in disability rights spaces and argue for further ADA amendments that appropriately guide healthcare and emergency response workers in making disability-informed decisions. Part IV will conclude by emphasizing the need for such provisions.

II. Background

Title II of the ADA applies to any discrimination on the basis of disability in a public entity.[6] Like Section 504 of the Rehabilitation Act, which covers any institution that receives federal financial assistance, Title II contains a qualification standard that disabled people must meet in order to be protected by this specific section of the law.[7] These standards are subject to ableist opinions in themselves, as interpretations of what it means to be a “qualified individual” often excludes several impairments.

Title III, on the other hand, does not contain a qualification standard, as its broad coverage was intended to protect all individuals with various impairments in places of public accommodation.[8] It states that places of public accommodation cannot discriminate on the basis of disability, including private hospitals and other healthcare facilities.[9] Together, Section 504 of the Rehabilitation Act and Titles II and III of the ADA work together to cover public and private hospitals alike, making it unlawful to discriminate because of disability within them.[10]

Legal interpretations of these provisions are not always in sync. For instance, in Sam Bagenstos’ Who Gets the Ventilator? Disability Discrimination in COVID-19 Medical Rationing Protocols, he states, “a proper interpretation of the law requires assurances that such imminent-death determinations will be made based on the best available objective evidence, free from bias against people with disabilities or devaluation of their lives.”[11] His argument specifically rejects the “quality-of-life” frameworks that risk disabled lives for disposal in rationing decisions.[12] He concludes that these decisions must be instead based off of non-disability factors, not subject to stereotypes and discrimination.[13] While his approach interprets the law in ways that most certainly do not per se discriminate against disabled people in medical decisions, he also suggests, if a free-from-bias option is not available, a lottery process “would be more fair and democratically legitimate than placing the burden on disabled individuals” who already lack access to adequate health care.[14]

On the other side of this argument is Govind Persad with his Disability Law and the Case for Evidence Based Triage in a Pandemic.[15] He claims that evidence-based triage, which aims at saving more lives and length of lives, is “fully consistent with an emphasis on the legal and moral equality of each person and on our duties to the most vulnerable.”[16] Evidence-based triage pays less attention to quality-of-life arguments, and instead uses life-expectancy to determine who is likely to survive illness with the use of life-saving treatment.[17] With this, first, he hesitates to conclude that disability discrimination law governs medical resource allocation in the first place.[18] Second, assuming that it does, he discredits valid concerns of qualification standards used in triage care.[19] He states that quality-of-life and life expectancy are inherently different, and the proper use of “factually grounded prediction” instead of “invidious stereotypes” will permit rationing in favor of those with longer life expectancy if given the next available treatment.[20]

III. Discussion

 “Medical discrimination is always a dangerous reality for many people with disabilities in need of healthcare.”[21] The question of whether disability law applies to emergency medical treatment decisions is not a new debate. Today, disabled people are disproportionately impacted by COVID-19,[22] and the laws that aim to protect them must address such emergencies.

A. Response to Bagenstos’ and Persad’s Approaches to Medical Rationing

In comparing the two, Bagenstos outlines the most consistent approach to ethical, disability-neutral medical treatment, as it does not use utility or quality to determine which life is worth saving. However, without explicit and direct reference to an individual’s impairment, and clear reasoning as to why a patient requires immediate care, a system without disability-based considerations runs the risk of ignoring medical emergencies.

While Bagenstos provides a compelling and humanizing interpretation of disability discrimination law, the suggestion that, if implementing disability-neutral considerations is ineffective, the fairest alternative is a lottery process demonstrates the problem with interpreting outdated provisions to begin with. In fact, not using disability-based distinctions and the implementation of lottery systems alike allow, and require, healthcare providers to ignore underlying medical conditions that need immediate attention and care.

Persad’s approach, while raising valid concerns for other types of resource allocation like lottery and minimal triage, yet again evidences the difficulty in applying antiquated law. In contrast to his argument, it is possible that quality-of-life and life expectancy equally deem disabled lives as unworthy of saving. Even without the use of stereotypes, because of the societal differences, economic inequalities, and lengthy history of injustices for disabled populations, medical “evidence” could still persuade health professionals to deem a life with pre-existing disabilities as low-quality and possessing limited life expectancy—even with the use of life-saving treatment. These disparities and systems of inequality have no room in our legal system and should not be accounted for in provisions that regulate them. Instead, these should be reminders that because of the horrid truths of dependency and “care” that disabled people have been subjected to, or neglected of, the medical and legal fields need to work together to overcome the injustices that disabled people face.

Persad’s narrative that life-saving treatment decisions are not about equity but instead about saving more lives and length of lives[23] directly discredits disability discrimination law and advocacy work that operates to prove the worth in each life. Instead, what Persad’s suggestion entails is that equity is not the concern when a choice to save more “healthy” and able-bodied life exists. In fact, even with his slight emphasis on saving disabled lives, he punts the point by, in essence, indicating that people with less-serious disabilities (those likely to live longer with the use of medical resources) are the ones who benefit from evidence-based triage.[24] This interpretation of disability law and its intentions erroneously circulates dangerous consequences on all disabled lives––even those ones who seemingly “benefit” from evidence-based triage. 

The problem remains: how will the law prevent discrimination against those with disabilities, namely, prohibiting medical professionals from using an individual’s impairment against them when deciding who receives treatment, while also emphasizing the need to take disability as a priority during emergencies? The idea should not be to erase disability from the matter altogether, but instead should work toward prioritizing those with serious medical conditions. 

B. The Need for Emergency Planning in Disability Rights Spaces

In 2005, before the ADA was amended, but notably after Section 504, older adults and people with disabilities accounted for 71% of those who died in Hurricane Katrina.[25] This was both a result of these populations being left behind and excluded from receiving life-saving treatments.[26] In response to this, disability rights groups and other national councils started creating guidelines to ensure that disabled people have the right to be included in emergency planning.[27] For instance, the Federal Emergency Management Agency’s (FEMA) offered recommendations to integrate people “with and without disabilities who have access and functional needs into every aspect of emergency shelter planning and response.”[28]

More similarly, in the line of “Baby Doe” cases, several babies with birth defects were denied life-saving treatments.[29] When these medical decisions were challenged, courts overwhelmingly limited babies with disabilities’ right to live.[30] Notably, these cases were brought on Section 504 claims, as they date before the ADA.[31] One court specifically reasoned that the qualification standards in the Rehabilitation Act logically conclude “that Congress never contemplated that Section 504 would apply to treatment decisions of this nature.”[32]

Bagenstos is correct to distinguish the Baby Doe cases from medical rationing in emergency situations today.[33] The Baby Doe cases should not set the standard for governing disability discrimination law in medical-rationing decisions because, although Rehabilitation Act and ADA claims are interpreted mostly the same, Congress, in amending the ADA, commanded courts to interpret it to the broadest extent possible.[34] Similarly, as Bagenstos addresses in his piece, two Supreme Court cases have since recognized the applicability of disability law in medical treatment decisions.[35]

In sum, disabled people have the right to be included in emergency situations free from bias and discrimination. Since interpreting the ADA broadly prohibits disability discrimination on behalf of a public or private entity, this logic should apply to rationing decisions.

C. How ADA Amendments Can Get Us There

Yet, the question remains: is it permissible that “‘the need to protect public health may at times outweigh the rights of disabled individuals[?]’”[36] While the ADA and other legal precedent may not explicitly prohibit medical rationing on the basis of disability, proper amendments should work toward this. As Persad addresses in his argument, lottery and partial triage treatment systems could potentially risk the lives of everyone,[37]including vulnerable populations, instead of favoring, or even simply treating them altogether. However, when the idea is to save lives, using the basis of disability and impairment in an evidence-based triage system will disproportionately target disabled populations for disposal.

Risking disabled lives is not a solution to protecting the greater public. This backpedals on disability rights, ignores the value of all lives, and falsely assumes that disabled people are somehow separate from the rest of society. Just as the ADA amendments worked to overcome discrepancies in language and enforcement of disability discrimination law,[38] the ADA should be further amended to aim toward a disability justice. Here, pre-existing disabilities that are related to or may exacerbate impairments are not simply included in the discussion of being worthy for medical treatment, but instead used as a factor to prioritize them in systems of triage. Amendments should work to regulate the system of treatment in all situations, and this should of course address pandemics and like situations where medical resources are of absolute scarcity. These provisions that teach the value in each life should not be the burden of disabled people to prove or guide, but instead should be inherent in disability law and medical ethics alike.

IV. Conclusion

When the situation arises where a disabled person requires medical resources for survival, her pre-existing impairment should never be used to discredit the value in her life, but should rather be the primary reason why her need for life-saving treatment is apparent. While this requires legal, moral, and ethical debates, and arguably far outreaches legal reform, it helps our system move from rights to justice for a community that has been historically excluded from a just conversation in the first place.

---

[1] The Rehabilitation Act of 1973, 29 U.S.C. §§ 701-799 (1973).

[2] Americans with Disabilities Act of 1990, 42 U.S.C. §§ 12101-12213 (1990).

[3] Americans with Disabilities Act Amendments Act of 2008, 42 U.S.C.A. § 12101-12201 (2008

[4] See 29 U.S.C. §§701-799. See also 42 U.S.C. §§ 12101-12213.  

[5] See Liz Sayce, The forgotten crisis: exploring the disproportionate impact of the pandemic on disabled people, The Health Foundation (Feb. 21, 2021),https://www.health.org.uk/news-and-comment/blogs/the-forgotten-crisis-exploring-the-disproportionate-impact-of-the-pandemic.

[6] 42 U.S.C. § 12132.

[7] 42 U.S.C. § 12131(A)(2).  

[8] See 42 U.S.C. § 12181(a). See also 42 U.S.C. § 12181(b)(2)(A).

[9] Id. See also 42 U.S.C. § 12181(7)(F). “The following private entities are considered public accommodations for purposes of this subchapter, if the operations of such entities affect commerce…pharmacy, insurance office, professional office of a health care provider, hospital, or other service establishment.”  

[10] See A Guide to Disability Rights Law, ADA.gov (Feb. 2020), https://www.ada.gov/cguide.htm#:~:text=Section%20504%20states%20that%20%22no,or%20the%20United%20States%20Postal [https://perma.cc/VNY9-NQYB].

[11] Sam Bagenstos, Who Gets the Ventilator? Disability Discrimination in COVID-19 Medical Rationing Protocols, 130 Yale L.J. (2020).

[12] Id.

[13] Id.

[14] Id.

[15] Govind Persad, Disability Law and the Case for Evidence-Based Triage in a Pandemic, 130 Yale L.J. (2020).

[16] Id.

[17] Id.

[18] Id.

[19] Id.

[20] Id.

[21] How COVID-19 impacts people with disabilities: research shows people with disabilities are at risk for mental health problems, American Psychological Association (May 6, 2020), https://www.apa.org/topics/covid-19/research-disabilities.

[22] See Sayce, supra note 5.

[23] See Persad, supra note 15.

[24] Id.

[25] Kathleen Otte, No One Left Behind: Including Older Adults and People with Disabilities in Emergency Planning, Administration for Community Living (Sept. 4, 2015), https://acl.gov/news-and-events/acl-blog/no-one-left-behind-including-older-adults-and-people-disabilities [https://perma.cc/6ACK-SJBT].

[26] Id.

[27] Id.

[28] See Federal Emergency Management Agency, Guidance on Planning for Integration of Functional Needs Support Services in General Population Shelters, Federal Emergency Management Agency (Nov. 2010), https://www.fema.gov/pdf/about/odic/fnss_guidance.pdf.

[29] Baby Does and the Right to Lifesaving Treatment, Minnesota (Aug. 1, 2011), https://mn.gov/mnddc/honoring-choices/cnnReports/Moral_and_Ethical_Issues4-Baby-Doe-Kappel.pdf.

[30] Id.

[31] 29 U.S.C. § 704.

[32] United States v. Univ. Hosp., State Univ. of N.Y., 729 F2d 133, 157 (2d Cir. 1984).

[33] See Bagenstos, supra note 12.

[34] 42 U.S.C.A. §12101(b)(1)-(5).

[35] See Bagenstos, supra note 12. See also the decisions in Bragdon v. Abbott and Olmstead v. L.C.

[36] See Persad, supra note 15. quoting 28 C.F.R. § 35.130(b)(8) (2019).

[37] Id.

[38] 42 U.S.C.A. § 12101-12201.