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Recalibrating Transplant Eligibility Criteria: Ensuring Equitable Access to Organ Transplantation for Intellectually Disabled Persons

Published online by Cambridge University Press:  11 April 2023

Adam Peña
Adam Peña*
Affiliation:
Baylor College of Medicine, Houston, TX, USA
*
Email: [email protected]
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Abstract

The American with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act have made little progress towards preventing disability-based discrimination within the organ transplant evaluation process. Intellectual and developmental disabilities (I/DD) pose a unique problem for transplant teams and transplant physicians because I/DDs can simultaneously be a legitimate contraindication for transplantation and a mechanism for invidious discrimination against intellectually disabled persons. A culprit for ongoing disability-based discrimination is a transplant center’s authority to develop its own eligibility criteria. While medical criteria for eligibility are generally well-settled, psychosocial criteria — an amorphous constellation of risk factors for post-transplant success — can serve as a facially neutral disguise for social worth determinations of individuals with I/DDs. Consequently, individuals with I/DDs are unjustifiably denied eligibility for organ transplantation and transplant-related services.

This Article begins by identifying the pitfalls of current federal antidiscrimination legislation. It then discusses the foreseen benefits and drawbacks of House Resolution (H.R.) 8981, a recently proposed federal bill, that expressly prohibits disability-based discrimination within the organ transplant evaluation process. The Article ends by offering potential solutions for professional organizations and transplant centers that aim to provide for equitable access to organ transplantation and transplant-related services for intellectually disabled individuals.

Keywords

solid organ transplantationdisabilitiesAmericans with Disabilities Actdisability-based discriminationintellectual and development disabilities
Type
Articles
Information
American Journal of Law & Medicine , Volume 48 , Issue 4 , December 2022 , pp. 380 - 411
Copyright
© 2023 The Author(s)

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References

1 Cara K. Black et al., Solid Organ Transplantation in the 21st Century, 6 Annals of Translational Med. 409, 409 (2018).

2 About UNOS: Saving Lives Together, UNOS, https://unos.org/about/UNOS [https://perma.cc/JTT9-XU6U] (last visited Aug. 8, 2021).

3 National Data, OPTN, https://optn.transplant.hrsa.gov/data/view-data-reports/national-data/# [https://perma.cc/S83M-WSAW] (last updated June 5, 2021).

4 See The Success of National Organ Donation and Transplant System, UNOS, https://unos.org/about/success-of-national-organ-donation-and-transplant-system/ [https://perma.cc/3J6S-M7H6] (last visited June 6, 2021).

5 Arthur L. Caplan, If I were A Rich Man Could I Buy a Pancreas? And Other Essays on the Ethics of Healthcare 159 (1992); Michele Goodwin, Black Markets: The Supply and Demand of Body Organs 10 (2006). An altruistic system of organ donation relies upon the public’s concern for the disinterested well-being for other individuals who may need an organ transplant.

6 Goodwin, supra note 6, at 15.

7 Laura C. Hoffman, Access to Health Care and the Intellectually and Developmentally Disabled: Anti-Discriminatory Law, Health Law, and Quality of Life, 22 J. Gender, Race & Just. 151, 155 (2019); Danielle Richards, The Defibrillation of NOTA: How Establishing Federal Regulation Waitlist Eligibility May Save Organ Transplant Patients with Disabilities from Flat-Lining, 87 S. Cal. L. Rev. 151, 164 (2013).

8 Richards, supra note 8, at 153.

9 Id.

10 Am. Psychiatric Ass’n, Diagnostic and Statistical Manual of Mental Disorders: DSM-5 33 (5th ed. 2013).

11 Defining Criteria for Intellectual Disability, Am. Ass’n of Intell. & Dev. Disabilities, https://www.aaidd.org/intellectual-disability/definition [https://perma.cc/WDE9-HFC7] (last visited Oct.12, 2022).

12 Richards, supra note 8, at 156.

13 Ashton Chen et al., Access to Transplantation for Persons with Intellectual Disability: Strategies for Nondiscrimination, 20 Am. J. Transplant 2009, 2010 (2020); Nat’l Council on Disability, Organ Transplant Discrimination Against People with Disabilities: Part of the Bioethics & Disability Series, 12-1313 (2019), https://ncd.gov/sites/default/files/NCD_Organ_Transplant_508.pdf [https://perma.cc/6MF7-M6ZM].

14 Chen et al., supra note 14, at 2010.

15 Elizabeth F. Emens, Framing Disability, 2012 Univ. Ill. L. Rev 1383, 1385 (2012). The American Association of Intellectual and Developmental Disabilities provides the following definition for an intellectual disability: a condition characterized by significant limitations in both intellectual functioning and adaptive behavior that originates before the age of 22.

16 Hoffman, supra note 8, at 152; Nat’l Council on Disability, supra note 14, at 57; Tien-Kha Tran, Organ Transplantation Eligibility: Discrimination on the Basis of Cognitive Disability, 24 J.L. & Pol’y 631, 651-54 (2016); Lawmakers Introduce Federal Legislation To Prevent Organ Transplant Discrimination, Nat’l Down Syndrome Soc’y (Dec. 17, 2020), https://www.ndss.org/lawmakers-introduce-federal-legislation-prevent-organ-transplant-discrimination/ [https://perma.cc/EKG7-6NZ5]. California, Delaware, Kansas, Maryland, Massachusetts, New Jersey, Ohio, Oregon, Indiana, Louisiana, Virginia, Iowa, Missouri, and Pennsylvania are the fourteen states who have enacted antidiscrimination laws.

17 Hoffman, supra note 8, at 165; Angela T. Whitehead, Rejecting Organs: The Organ Allocation Process and the American with Disabilities Act, 24 Am. J.L. & Med. 489, 491 (1998); see Richards, supra note 8, at 159.

18 Richards, supra note 8, at 155, 170-71.

19 Nat’l Council on Disability, supra note 14, at 26; Richards, supra note 8, at 154; Sara Frank, Eligibility Discrimination of the Intellectually Disabled in Pediatric Organ Transplantation, 10 J. Health & Biomedical L. 101, 104 (2014).

20 Nat’l Council on Disability, supra note 14, at 30; Richards, supra note 8, at 153; Frank, supra note 20, at 106; Chen et al., supra note 14, at 2010.

21 H.R. Res. 8981, 116th Cong. (2020).

22 Tran, supra note 17, at 637.

23 Samuel R. Bagenstos, Who Gets the Ventilator? Disability Discrimination in COVID-19 Medical-Rationing Protocols, 130 Yale L.J. Forum 1, 8 (2020).

24 Bagenstos, supra note 24, at 8.

25 Begenstos, supra note 24, at 4; Alice Bacherini et al., Physcians’ Attitudes About Individuals with Intellectual Disability and Health Care Practices Towards Them: A Systematic Review, 33 Psychiatria Danubina 79, 87 (2021); Lisa I. Iezzoni et al., Physicians’ Perceptions of People with Disability and Their Health Care, 40 Health Affs. 297, 303 (2021).

26 Emens, supra note 16, at 1401.

27 Doron Dorfman, Re-Claiming Disability: Identity, Procedural Justice, and the Disability Determination Process, 42 L. & Soc. Inquiry 195, 199.

28 Hoffman, supra note 8, at 170; Mindy Statter et al., Children with Intellectual and Developmental Disabilities as Organ Transplantation Recipients, 145 Pediatrics 3 (2020).

29 Nat’L Council on Disability, supra note 13, at 25; Richards, supra note 8, at 154; Hoffman, supra note 8, at 169 (quoting Frequently Asked Questions, United Network For Organ Sharing, https://unos.org/transplant/frequently-asked-questions/ (last visited Jun. 16, 2021).

30 Nat’L Council on Disability, supra note 14, at 26; Frank, supra note 20, at 104-05.

31 Nat’L Council on Disability, supra note 14, at 26.

32 José R. Maldonado et al., The Stanford Integrated Psychosocial Assessment for Transplantation: A Prospective Study of Medical and Psychosocial Outcomes, 77 Psychosomatic Med. 1018, 1018 (2015); see also Quan M. Bui et al., Psychosocial Evaluation of Candidates for Heart Transplant and Ventricular Assist Devices, 12 Circulation: Heart Failure 2 (2019).

33 Statter et al., supra note 29, at 5; Maldonado et al., supra note 33.

34 Maldonado et al., supra note 33, at 124-25.

35 Id. at 125.

36 Statter et al., supra note 29, at 5; Mary Ellen Olbrisch & James L. Levenson, Psychosocial Assessment of Organ Transplant Candidates, 36 Psychosomatics 236, 236 (1995).

37 Maldonado et al., supra note 33, at 126.

38 Id.

39 Id.

40 See Bui et al., supra note 33, at 2.

41 Maldonado et al. 2, supra note 33, at 1019.

42 See, e.g., Frank, supra note 20, at 108-09.

43 Maldonado et al., supra note 33, at 125.

44 Id. at 127.

45 See Laura Guidry-Grimes et al., Disability Rights as a Necessary Framework for Crisis Standards of Care and the Future of Health Care, 50 Hastings Ctr. Rep. 28, 29 (2020).

46 Statter et al., supra note 29, at 2.

47 Nat’l Council on Disability, supra note 14, at 26.

48 Richards, supra note 8, at 153.

49 Hoffman, supra note 8, at 152; Nat’l Council on Disability, supra note 14, at 39, 50; Statter et al., supra note 29, at 3, 6.

50 Statter et al., supra note 29, at 3; Richards, supra note 8, at 164.

51 Christopher Richards et al., Use of Neurodevelopmental Delay in Pediatric Solid Organ Transplantation Listing Decisions: Inconsistencies in Standards Across Major Pediatric Transplant Centers, 13 Pediatric Transplantation 843, 847 (2009); Robert L. Shalock et al., Intellectual Disability: Definition, Classification, and Systems of Supports (12th ed. 2021).

52 Shalovk et al., supra note 52.

53 Mary Ellen Olbrisch & James L. Levenson, Psychosocial Assessment of Organ Transplant Candidates: Current Status of Methodological and Philosophical Issues, 36 Psychosomatics 236, 238 (1995); Ari Ne’eman et al., Health Resources & Serv. Admin., https://ww.organdonor.gov/statistics-stories/statistics.html (last updated Jan. 2019); Hoffman, supra note 8, at 152.

54 Nat’l Council on Disability, supra note 14, at 30.

55 Emma Samelson-Jones et al.Cardiac Transplantation in Adult Patients with Mental Retardation: Do Outcomes Support Consensus Guidelines?, 53 Psychosomatics 133, 135 (2012).

56 Richards et al., supra note 52, at 846.

57 Id. at 848.

58 Hoffman, supra note 8, at 155; Richards, supra note 8, at 164.

59 Richards et al., supra note 52, at 847; Nat’l Council on Disability, supra note 14, at 31; Statter et al., supra note 29, at 3.

60 Statter et al., supra note 29, at 3.

61 Id.

62 Katharine Secunda et al., National Survey of Provider Opinions on Controversial Characteristics of Liver Transplant Candidates, 19 Liver Transplantation 395, 399 (2013); Anji Wall et al., Genetic disease and intellectual disability as contraindications to transplant listing in the United States: A survey of heart, kidney, liver, and lung transplant programs, 24 Pediatric Transplantation 1, 2 (2020).

63 Wall et al., supra note 63, at 2.

64 Id. at 7. While the study evidences a significant improvement transplant centers’ perceptions of cognitive and intellectual disability as an absolute contraindication, the data suggests that of the 335 participating transplant centers, 213 transplant centers considered mild cognitive and intellectual disability as a relative contraindication for transplant eligibility. At first glance, the data may not seem controversial. However, the study leaves a question open: What are the bases for a transplant center’s determination that a cognitive and intellectual disability is a relative contraindication for a potential candidate? Considering the lack of standardized guidelines, it is reasonable to imagine that unfavorable biases related to intellectually disability could have negatively influenced a transplant center’s determination that a mild intellectual disability is relative contraindication for a specific potential candidate. The determination that a mild cognitive and intellectual disability is relative contraindication for a specific candidate could also be the effect of the desperate impact that arises from the use of standardized psychosocial evaluation tools.

65 Id. The authors noted that when compared to the results of 1993 study conducted by Levenson and Olrisch, there is a notable improvement in the percentage of transplant centers not considering several intellectual disability as an absolute contraindication for heart (37.2% compared to 74.4%), liver (22.4% compared to 45.7%) and kidney (11.8% compared to 24.0%) transplant centers.

66 Nat’l Council on Disability, supra note 14, at 38.

67 Statter et al., supra note 29, at 3.

68 Iezzoni et al., supra note 26, at 303.

69 Id.

70 Nat’l Council on Disability, supra note 14, at 39-40; Frank, supra note 20, at 105; Statter et al., supra note 29, at 22-23; Chen et al., supra note 14, at 2010.

71 OPTN/UNOS Ethics Committee General Considerations in Assessment of Transplant Candidacy, Organ Procurement and Transplantation Network, https://optn.transplant.hrsa.gov/resources/ethics/general-considerations-in-assessment-for-transplant-candidacy/ [https://perma.cc/H2SE-9C3D] (last visited June 17, 2021).

72 Statter et al., supra note 29, at 4; Nat’l Council on Disability, supra note 14, at 38. While this author notes philosophical disagreements about the definition of “maximum benefit,” those discussions are outside the scope of this Article.

73 See Lainie Friedman Ross, The Ethics of Organ Transplantation in Persons with Intellectual Disability, 235 J. Pediatrics 6, 7 (2021) (proposing that one implication of quality-of-life arguments could direct available organs to middle-aged white males of higher socioeconomic status because data evidence that this group has longer graft and patient survival.)

74 Id.; see also, Statter et al., supra note 29, at 3-4.

75 See Ross, supra note 74, at 5.

76 Nat’l Council on Disability, supra note 14, at 39; Chen et al., supra note 14, at 2010-11; Statter et al., supra note 29, at 3; Wall et al., supra note 63, at 5,8. Note that Empirical data evaluating patient and graft survival for transplant recipients with an I/DD that is genetic in origin versus those with an I/DD that is nongenetic in origin remains sparse.

77 Wall et al., supra note 63, at 5,8.

78 Nat’l Council on Disability, supra note 10, at 39; Chen et al., supra note 14, at 2010-11; Statter et al., supra note 29, at 3; Wall et al., supra note 63, at 5,8.

79 Ross, supra note 74, at 5.

80 Id.

81 The WHOQOL Group, The World Health Organization Quality of Life Assessment (WHOQOL): Position Paper from the World Health Organization, 41 Soc. Sci. Med. 1403, 1405 (1995).

82 Chen et al., supra note 14, at 2012; Aaron Wightman et al., Fairness, Severe Intellectual Disability, and the Special Case of Transplantation, 22 Pediatric Transplantation, Aug. 2018 at 3.

83 Iezzoni et al., supra note 26, at 300.

84 Iezzoni et al., supra note 26, at 304; Statter et al., supra note 29, at 3; Wightman et al., supra note 83, at 3.

85 Emens, supra note 16, at 1392-93.

86 Dorfman, supra note 28, at 199-200.

87 Statter et al., supra note 19, at 5.

88 Chen et al., supra note 14, at 2011-12; see Ross, supra note 74, at 5; Statter et al., supra note 29, at 5.

89 Chen et al., supra note 14, at 2011-12.

90 See CPR Supported Decision-Making: Frequently Asked Questions, Ctr. for Pub. Representation, https://supporteddecisions.org/about-supported-decision-making/frequently-asked-questions/ [perma.cc/YVU3-S7Q3] (last visited Dec. 31, 2022); see also U.S. Supported Decision-Making Laws, Ctr. for Pub. Representation, https://supporteddecisions.org/resources-on-sdm/state-supported-decision-making-laws-and-court-decisions/ [perma.cc/P454-7UXM] (last visited Jan. 9, 2023). For example, Subchapter B, Section 1357.051 of the Texas Estates Code permits a disabled individual to authorize the support to:

provide supported decision-making, including assistance in understanding the options, responsibilities, and consequences of the adult’s life decisions, without making those decisions on behalf of the adult with a disability; 2) … assist the adult in accessing, collecting, or obtaining information that is relevant to a given life decision, including medical, psychological, financial, educational, or treatment records, from any person; 3) assist the adult with a disability in understanding the information described by Subdivision (2); and 4) assist the adult in communicating the adult’s decisions to appropriate persons.

Tex. Est. Code Ann. §1357.051 (West 2015).

91 Id.; Chen et al., supra note 14, at 2011-12.

92 Nat’l Council on Disability, supra note 14, at 40; Chen et al., supra note 14, at 2011-12.

93 Bui et al., supra note 33, at 4; Maldonado et al., supra note 33, at 126.

94 Statter et al., supra note 29, at 5.

95 Frank, supra note 20, at 106.

96 Richards, supra note 8, at 152.

97 Mary Crossley, Becoming Visible: The ADA’s Impact on Health Care for Persons with Disabilities, 52 Ala. L. Rev. 51, 51 (2000); Whitehead, supra note 18, at 482, at 1; Richards, supra note 8, at 163; Tran, supra note 17, at 635.

98 42 U.S.C. §12101 (2006). For discussion of the statute’s aims, see David Orentlicher, Destructuring Disability: Rationing of Health Care and Unfair Discrimination Against the Sick, 31 Harv. C.R.-C.L.L. Rev. 49, 51 (1996).

99 Crossley, supra note 98, at 51.

100 Jessica Roberts, Health Law as Disability Rights Law, 97 Minn. L. Rev. 1963, 1982 (2013); Richards, supra note 4, at 156 (quoting Orentlicher, supra note 99, at 53); Whitehead, supra note 18, at 482; see Hoffman, supra note 8, at 165.

101 Bagenstos, supra note 24, at 22; United States v. Univ. Hosp., State Univ. of N.Y., 729 F.2d 144, 156 (2. Cir. 1984).

102 See Univ. Hosp., 729 F.2d at 156-57.

103 Id. at 146.

104 Id.

105 Id. at 156.

106 Id. at 157.

107 Id. at 156-7.

108 Bowen v. American Hosp. Ass’n., 476 U.S. 625, 630 (1986).

109 Id. at 624.

110 Bagenstos, supra note 24, at 23.

111 Pennsylvania Dep’t. of Corr. v. Yeskey, 524 U.S. 206, 208 (1998).

112 Id.

113 Id. at 211-12.

114 Id. at 213.

115 Id. at 212 (quoting Sedima, S.P.R.L. v. Imrex Co., 473 U.S. 479, 499 (1985)).

116 See id. at 206, 209-10.

117 Bagenstos, supra note 24, at 23.

118 See id.

119 42 U.S.C. §12102(1) (2006).

120 42 U.S.C. §12102(2) (2006).

121 Richards, supra note 8, at 163.

122 Richards, supra note 8, at 176; Whitehead, supra note 18, at 482; see also Nat’l Council on Disability, supra note 14, at 47; Tran, supra note 17, at 635-36.

123 Nat’l Council on Disability, supra note 14, at 47; Richards, supra note 8, at 163.

124 Nat’l Council on Disability, supra note 14, at 47.

125 Nat’l Council on Disability, supra note 14, at 47; see Frank, supra note 20 at 106.

126 Nat’l Council on Disability, supra note 14, at 48.

127 42 U.S.C. §12111(8), 12102(1); Richards, supra note 8, at 163.

128 Tran, supra note 17, at 637.

129 Nat’l Council on Disability, supra note 14, at 47; Richards, supra note 8, at 163; Whitehead, supra note 18, at 482.

130 Nat’l Council on Disability, supra note 14, at 47; see Whitehead, supra note 18, at 491.

131 Id.

132 42 U.S.C. §12182(b)(1)(A)(i) (2006).

133 Nat’l Council on Disability, supra note 10, at 47; Richards, supra note 8, at 163; Whitehead, supra note 18, at 482.

134 42 U.S.C. §12182(a) (2006); Nat’l Council on Disability, supra note 14, at 47; Richards, supra note 8, at 163; Whitehead, supra note 18, at 482.

135 42 U.S.C. §12182(b)(2)(A)(ii) (2006); Nat’l Council on Disability, supra note 14, at 48; Whitehead, supra note 18, at 482.

136 42 U.S.C. §12182(b)(2)(A)(ii) (2006).

137 Statter et al., supra note 29, at 3.

138 Cmty. Ethics Comm., Cmty. Voices in Med. Ethics, Inc., Organ Transplant Recipient Listing Criteria, 14 (2014), https://www.childrenshospital.org/sites/default/files/media_migration/3a6cb042-e46a-41a3-a1e1-1d48744ab4fe.pdf [perma.cc/5JV9-JNPS]; Frank, supra note 20, at 103. Ethics opinions are valuable tools that help define the boundaries of the practice of organ transplant medicine. However, these types of positions statements alone will not likely prevent discriminatory policies and practices. Id. at 110.

139 Richards, supra note 8, at 164.

140 Nat’l Council on Disability, supra note 10, at 39; Richards, supra note 8, at 164.

141 Richards, supra note 8, at 164; see Crossley, supra note 98, at 54.

142 Whitehead, supra note 18, at 491.

143 See Richards, supra note 8, at 164; see also, Crossley, supra note 98, at 55-56.

144 Richards, supra note 8, at 164.

145 See Govind Persad, Disability Law and the Case for Evidence-Based Triage in a Pandemic, 130 Yale L.J. Forum 26, 35 (2020); Richards, supra note 8, at 163 (noting that a transplant center may use mental disability as a consideration if the transplant center has actual evidence that the mental disability will impact transplant recipient’s ability to comply with post-transplant regimens); Tran, supra note 17, at 639-41. See also Begenstos, supra note 24, at 8.

146 Nat’l Council on Disability, supra note 10, at 47; Richards, supra note 8, at 163; Whitehead, supra note 18, at 491.

147 Nat’l Council on Disability, supra note 10, at 47-48; Tran, supra note 17, at 633; Whitehead, supra note 18, at 482.

148 See Ari Ne’eman et al., Organ Transplantation and People with I/DD: A Review of Research, Policy and Next Steps, policy brief, Autistic Self-Advoc. Network, https://autisticadvocacy.org/wp-content/uploads/2013/03/ASAN-Organ-Transplantation-Policy-Brief_3.18.13.pdf (2013).

149 Leslie Lee, Giving Disabled Testers Access to Federal Courts: Why Standing Doctrine is Not the Right Solution to Abusive ADA Litigation, 19 Va. J. Soc. Pol’y & L. 319, 339 (2011); Casey L. Raymond, A Growing Threat to the ADA: An Empirical Study of Mass Filings, Popular Backlash, and Potential Solutions Under Titles II and III, 18 Tex. J. on C.L. & C.R. 236, 252 (2013).

150 Nat’l Council on Disability, supra note 14, at 49.

151 Frank, supra note 20, at 106; Whitehead, supra note 18, at 491.

152 Nat’l Council on Disability, supra note 14, at 49; Tran, supra note 17, at 637.

153 Samuel R. Bagenstos, The Perversity of Limited Civil Rights Remedies: The Case of “Abusive” ADA Litigation, 54 UCLA L. Rev. 1, 9 (2006); Lee, supra note 151, at 346.

154 Id.

155 Bagenstos, supra note 155, at 9; Lee, supra note 150, at 340; Raymond, supra note 150, at 251.

156 Raymond, supra note 151, at 251.

157 Id.

158 Bagenstos, supra note 155, at 10; Lee, supra note 150, at 321; Raymond, supra note 150, at 252.

159 Bagenstos, supra note 155, at 10.

160 Crossley, supra note 98, at 56; Frank, supra note 20, at 106-07. Another speculated reason for the dearth of a case law on the subject is that the individual with I/DD seeking a transplant may not be aware that she has been subject to illegal discrimination. Assuming awareness of a potential remedy, litigation is expensive, and some individuals may not have the funds to pursue litigation to its completion.

161 Crossley, supra note 98, at 56; Frank, supra note 20, at 106; Nat’l Council on Disability, supra note 14, at 50.

162 Nat’l Council on Disability, supra note 14, at 50.

163 Id.

164 Nat’l Council on Disability, supra note 14, at 50 (describing anecdotal testimony that Leif O’Neil was denied a heart transplant because of his autism. O’Neil was too sick to pursue a federal claim of discrimination).

165 Hoffman, supra note 8, at 157; Nat’l Council on Disability, supra note 14, at 57; Nat’l Down Syndrome Soc’y, supra note 12; Tran, supra note 17, at 637.

166 Frank, supra note 20, at 103; Nat’L Council on Disability, supra note 14, at 57.

167 Frank, supra note 20, at 103.

168 Nat’l Council on Disability, supra note 14, at 51-53.

169 Frank, supra note 20, at 102; Nat’l Council on Disability, supra note 14, at 51-53.

170 Nat’l Council on Disability, supra note 14, at 51.

171 Hoffman, supra note 8, at 157.

172 Frank, supra note 20, at 106; Nat’l Council on Disability, supra note 14, at 51.

173 Nat’l Council on Disability, supra note 14, at 54.

174 See supra note 12.

175 See supra note 45, 46.

176 Nat’l Council on Disability, supra note 10, at 57-60; Richards, supra note 8, at 168.

177 Frank, supra note 20, at 107 (noting that of the fourteen states with enacted antidiscrimination legislation, only California and New Jersey outlaw discrimination on the basis of intellectual disability).

178 Id.

179 See Frank, supra note 20, at 56.

180 Whitehead, supra note 18, at 484.

181 Id.

182 Id.

183 Id.

184 Statter et al., supra note 29, at 3; see Iezzoni et al., supra note 26, at 303.

185 Crossley, supra note 98, at 55; Frank, supra note 20, at 106-07; Persad, supra note 146, at 35; see Bagenstos, supra note 24, at 8.

186 Frank, supra note 20, at 106.

187 Crossley, supra note 98, at 55; Frank, supra note 20, at 106-07 (arguing that courts will consider only the individual circumstances of the person that is party to the case, and not the eligibility of the individual within the context of the larger pool of transplant candidates).

188 Bagenstos, supra note 24, at 6; Crossley, supra note 98, at 56; Frank, supra note 20, at 108; Nat’l Council on Disability, supra note 14, at 50; Ari Ne’eman et al., The Treatment of Disability under Crisis Standards of Care: An Empirical and Normative Analysis of Change over Time during COVID-19, 46 J. Health Pol’y & L. 831, 855 (2021).

189 Crossley, supra note 98, at 56.

190 Nat’l Down Syndrome Soc’y, supra note 12.

191 H.R. Res. 8981.

192 Nat’l Down Syndrome Soc’y, supra note 12.

193 H.R. Res. 8981, §§(2)(2)(a), (3)(a)(1)-(2).

194 Id.

195 Id. §(2)(1)(4), (3)(d)(2).

196 Tran, supra note 17, at 637.

197 See Frank, supra note 20, at 107. Discrimination occurs when a transplant center fails to make reasonable modifications to its practices, policies, and procedures for purposes of ensuring accessibility to—and availability of—transplant-related services to disabled individuals. The Act requires that transplant centers provide accessibility services to support an intellectually disabled individual’s eligibility for solid organ transplantation.

198 H.R. Res. 8981, §(2)(2)(A)-(E) (clarifying that “auxiliary aides and services” includes qualified interpreters or other effective methods of making aurally delivered materials available to individual with hearing impairments; qualified readers, taped texts, or other effective methods of making visually delivered materials available to individuals with visual impairments; provision of information in a format that is accessible for individuals with cognitive, neurological, developmental, or intellectual disabilities; provision of supported decision-making services; and acquisition or modification or equipment or devices).

199 Id. §(3)(d)(1).

200 Id. §(3)(b)(1). The Act does not define the term “medically significant.”

201 Id. §(4)(b).

202 Id. §(4)(b)(1).

203 Id. §(4)(b)(2).

204 Id. §(4)(b)(3).

205 Nat’l Council on Disability, supra note 10, at 51.

206 H.R. 8981, §(3)(1)-(5).

207 Id. §§(3)(c), (3)(d)(3).

208 Whitehead, supra note 18, at 491.

209 H.R. Res. 8981, §(2)(7)(B).

210 Frank, supra note 20, at 107.

211 See Tran, supra note 17, at 637.

212 Crossley, supra note 98, at 56; Frank, supra note 20, at 106; Nat’l Council on Disability, supra note 14, at 50.

213 Nat’l Council on Disability, supra note 14, at 50.

214 H.R. Res. 8981, §(4)(c).

215 H.R. Res. 8981, §(4)(c).

216 Id. §(3)(a)(1)-(5).

217 H.R. Res. 8981, §(3)(d)(2).

218 Whitehead, supra note 18, at 491.

219 Nat’l Council on Disability, supra note 14, at 47, 54 (noting that some transplant centers are not following federal law by failing to assess sthe impact of an individual’s disability on her eligibility for solid organ transplant).

220 Bragdon v. Abbott, 524 U.S. 624, 624 (1998).

221 Id. at 648.

222 Id. at 650.

223 Ross, supra note 74, at 7.

224 Frank, supra note 20, at 118-19.

225 Richards, supra note 8, at 167-68; Hoffman, supra note 8, at 159-60.

226 Frank, supra note 20, at 125; Olbrisch & Levenson, supra note 40, at 238-39. See Hoffman, supra note 8, at 152; See also Cmty. Ethics Comm., supra note 92, at 4-5.

227 Emma Samelson-Jones et al., supra note 42, at 137; Richards, supra note 8, at 163-64.

228 A question arises: to what degree does a disability need to be medically significant to the determination of eligibility in order to satisfy the exception. The degree of medical significance remains an open question for future litigation.

229 Samelson-Jones et al., supra note 42, at 137.

230 Richards, supra note 8, at 189-92.

231 Wightman et al., supra note 83, at 3.

232 See, e.g., Tran, supra note 17, at 639.

233 Frank, supra note 20, at 123, 134.

234 See Richards, supra note 8, at 191.

235 Ne’eman et al., supra note 167, at 852. These authors note that the rapid evolution of disability-based crisis standards of care plans rose from obscurity to prominence because of behind-the-scenes negotiations that involved advocacy mobilization and media attention to medical resource allocation. Id.

236 See Frank, supra note 20, at 107.

237 Richards, supra note 8, at 170.

238 Frank, supra note 20, at 107; Richards, supra note 8, at 170.

239 Ne’eman et al., supra note 167, at 851.

240 Id. at 852.

241 About Us, U.S. Access Board: Advancing Full Access and Inclusion for All, https://www.access-board.gov/about/ [https://perma.cc/J7GM-THED] (last visited Aug. 8, 2021).

242 Guidry-Grimes et al., supra note 46, at 30.

243 Frank, supra note 20, at 107-08.

244 Tran, supra note 17, at 662.

245 Id.

246 Id. at 660-62.

247 H.R. Res. 8981, 116th Cong. §(3)(b)(1). Consideration of disability does not violate the statute when the transplant physician determines the disability is “medically significant to the provision of the anatomical gift.” Id.

248 See id. §(3)(b)(2).

249 See Richards, supra note 8, at 171.

250 For example, at the direction of HHS, UNOS could create uniform selection criteria. Additionally, regulatory guidelines could explain how to use psychosocial criteria appropriately so that eligibility decisions are not based on social worth determinations.

251 Nat’l Council on Disability, supra note 10, at 50.

252 See id. at 13.

253 Carri Becker, Private Enforcement of the Americans With Disabilities Act via Serial Litigation: Abusive or Commendable?, 17 Hatsings Women’s L. J. 93, 97 (2006).

254 H.R. Res. 8981, 116th Cong. §(4)(b)(1)-(3).

255 Compare id. (stating that no civil penalties are available for violation of the Act), with Kristi Bleyer, ADA: Enforcement Mechanisms, 15 Mental and Physical Disability L. 347, 349 (1992) (stating that the Title III remedies may include civil penalties up to $100,000 for repeated violations).

256 Bleyer supra note 262, at 349.

257 Frank, supra note 20, at 103-04.

258 H.R. Res. 8981, §(4)(b)(1)-(3).

259 Frank, supra note 20, at 108.

260 See Richards, supra note 8, at 171.

261 Frank, supra note 20, at 108; Nat’l Council on Disability, supra note 14, at 65-70; Tran, supra note 17, at 655-56; Richards, supra note 8, at 179-80.

262 Ne’eman et al., supra note 167, at 855.

263 Richards, supra note 8, at 192-93;

264 Statement of Principles for Organ Donation and Transplantation, Position Statements, American Society of Transplant Surgeons (April 12, 2021), https://asts.org/about-asts/position-statements#.YO9HqRNKiWA [https://perma.cc/55DT-WE85].

265 Richards, supra note 8, at 171.

266 Kidney Disease: Improving Global Outcomes (KDIGO) Kidney Transplant Candidate Work Group, KDIGO Clinical Practice Guideline on the Evaluation and Management of Candidates for Kidney Transplantation, 104 Transplantation S1-S103 (2020).

267 Id. at S73.

268 Id. at S36.

269 Chen et al., supra note 14, at 2014.

270 Id.

271 Tran, supra note 17, at 663-64; see Frank, supra note 20, at 124-25.

272 See generally Richards, supra note 8.

273 Richards, supra note 8, at 158.

274 Crossley, supra note 98, at 56; Frank, supra note 20, at 108; Nat’L Council on Disability, supra note 14, at 50.

275 Frank, supra note 20, at 133-34; Tran, supra note 17, at 642.

276 Frank, supra note 20, at 133-34.

277 Chen et al., supra note 14, at 2010; Nat’l Council on Disability, supra note 14, at 30-31.

278 Bui et al, supra note 33, at 9.

279 Id. at 10.

280 Statter et al., supra note 29, at 3-4.

281 Guidry-Grimes et al., supra note 46, at 28; Ne’eman et al., supra note 167, at 841.

282 For a discussion of why cognitive function is an appropriate consideration in this context, see Bui et al, supra note 33, at 2.

283 Richards, supra note 8, at 167-68.

284 See id.

285 See, e.g., Nat’l Council on Disability, supra note 14, at 47.

286 Femke Jonker et al., The Adaptive Ability Performance Test (ADAPT): A New Instrument for Measuring Adaptive Skills in People with Intellectual Disabilities and Borderline Intellectual Functioning, 0 J. of Applied Res. in Intell. Disabilities 1156, 1156 (2021); Statter et al., supra note 29, at 2.

287 Dorfman, supra note 28, at 200; Emens, supra note 16, at 1401; Sagit Mor, Disability and the Persistence of Poverty: Reconstructing Disability Allowances, 6 NW J. L. & Soc. Pol’y, 178, 180 (2011).

288 Dorfman, supra note 28, at 200; Emens, supra note 16, at 1401; Hoffman, supra note 8, at 164; Statter et al., supra note 29, at 4.

289 Statter et al., supra note 29, at 2.

290 Guilia Baldoni et al., Influence of Adaptive Behavior on the Quality of Life of Adults with Intellectual and Development Disabilities, 33 J. of Applied Res. in Intell. Disabilities 584, 586 (2020).

291 Chen et al., supra note 14, at 2013-14.

292 Although outside the scope of this Note, Chet et al. argue that current risk adjustment and reimbursement schemes disincentivize transplant centers from accepting intellectually disabled individuals because of “super additive” costs associated with disabled patients. Id. at 2014.

293 Id. at 2013.