STATE OF NEW YORK ________________________________________________________________________ 2123 2019-2020 Regular Sessions IN ASSEMBLY January 22, 2019 ___________ Introduced by M. of A. GUNTHER -- read once and referred to the Commit- tee on Mental Health AN ACT to amend the mental hygiene law, in relation to fairness in organ donations to persons with physical or mental disabilities The People of the State of New York, represented in Senate and Assem- bly, do enact as follows: 1 Section 1. The mental hygiene law is amended by adding a new article 2 35 to read as follows: 3 ARTICLE 35 4 ORGAN DONATION FAIRNESS ACT 5 Section 35.01 Legislative intent. 6 35.03 Definitions. 7 35.05 Discrimination prohibited. 8 35.07 Enforcement. 9 § 35.01 Legislative intent. 10 The legislature finds that: 11 (a) A mental or physical disability does not diminish a person's right 12 to health care; 13 (b) The Americans with Disabilities Act of 1990, 42 USC 12101, prohib- 14 its discrimination against persons with disabilities, yet many individ- 15 uals with disabilities still experience discrimination in accessing 16 critical health care services; 17 (c) Individuals with mental and physical disabilities have histor- 18 ically been denied life-saving organ transplants based on assumptions 19 that their lives are less worthy, that they are incapable of complying 20 with post-transplant medical regimens, or that they lack adequate 21 support systems to ensure such compliance; 22 (d) Although organ transplant centers must consider medical and 23 psychosocial criteria when determining if a patient is suitable to 24 receive an organ transplant, transplant centers that participate in 25 Medicare, Medicaid, and other federal funding programs are required to EXPLANATION--Matter in italics (underscored) is new; matter in brackets [] is old law to be omitted. LBD01781-01-9A. 2123 2 1 use patient selection criteria that result in a fair and non-discrimina- 2 tory distribution of organs; and 3 (e) New York residents in need of organ transplants are entitled to 4 assurances that they will not encounter discrimination on the basis of a 5 disability. 6 § 35.03 Definitions. 7 As used in this article: 8 (a) the term "disability" shall have the same meaning set forth in the 9 Americans with Disabilities Act of 1990 as amended by the ADA Amendments 10 Act of 2008, at 42 USC 12102. 11 (b) the term "auxiliary aids and services" shall include: 12 1. qualified interpreters or other effective methods of making aurally 13 delivered materials available to individuals with hearing impairments; 14 2. qualified readers, taped texts, or other effective methods of 15 making visually delivered materials available to individuals with visual 16 impairments; 17 3. provision of information in a format that is accessible for indi- 18 viduals with cognitive, neurological, developmental, or intellectual 19 disabilities; 20 4. provision of supported decision making services; 21 5. acquisition or modification of equipment or devices; and 22 6. other similar services and actions. 23 (c) the term "qualified individual" shall mean an individual who, with 24 or without the support networks available to them, provision of auxilia- 25 ry aids and services, or reasonable modifications to policies or prac- 26 tices, meets the essential eligibility requirements for the receipt of 27 an anatomical gift. 28 (d) the term "reasonable modifications to policies or practices" shall 29 include: 30 1. communication with individuals responsible for supporting an indi- 31 vidual with post-surgical and post-transplantation care, including medi- 32 cation; and 33 2. consideration of support networks available to the individual, 34 including family, friends, and home and community-based services, 35 including home and community-based services funded through Medicaid, 36 Medicare, another health plan in which the individual is enrolled, or 37 any program or source of funding available to the individual, in deter- 38 mining whether the individual is able to comply with post-transplant 39 medical requirements. 40 (e) the term "anatomical gift" shall mean a donation of all or part of 41 a human body to take effect after the donor's death for the purpose of 42 transplantation or transfusion. 43 (f) the term "organ transplant" shall mean the transplantation or 44 transfusion of a part of a human body into the body of another for the 45 purpose of treating or curing a medical condition. 46 (g) the term "supported decision making" shall include the use of a 47 support person or persons in order to assist an individual in making 48 medical decisions, communicate information to the individual, or ascer- 49 tain an individual's wishes, including: 50 1. inclusion of the individual's attorney-in-fact, health care proxy, 51 or any person of the individual's choice in communications about the 52 individual's medical care; 53 2. permitting the individual to designate a person of their choice for 54 the purposes of supporting that individual in communicating, processing 55 information, or making medical decisions;A. 2123 3 1 3. provision of auxiliary aids and services to facilitate the individ- 2 ual's ability to communicate and process health-related information, 3 including the use of assistive communication technology; 4 4. provision of information to persons designated by the individual, 5 consistent with the provisions of the Health Insurance Portability and 6 Accountability Act of 1996, 42 USC 1301, and other applicable laws and 7 regulations governing disclosure of health information; 8 5. provision of health information in a format that is readily under- 9 standable by the individual; and 10 6. if the individual has a court-appointed guardian or other individ- 11 ual responsible for making medical decisions on behalf of the individ- 12 ual, any measures to ensure that the individual is included in decisions 13 involving his or her own health care and that medical decisions are in 14 accordance with the individual's own expressed interests. 15 (h) the term "covered entity" shall mean: 16 1. any licensed provider of health care services, including licensed 17 health care practitioners, hospitals, nursing facilities, laboratories, 18 intermediate care facilities, psychiatric residential treatment facili- 19 ties, institutions for individuals with intellectual or developmental 20 disabilities, and prison health centers; or 21 2. any entity responsible for matching anatomical gift donors to 22 potential recipients. 23 § 35.05 Discrimination prohibited. 24 (a) A covered entity shall not, solely on the basis of a qualified 25 individual's mental or physical disability: 26 1. deem an individual ineligible to receive an anatomical gift or 27 organ transplant; 28 2. deny medical and related services related to organ transplantation, 29 including evaluation, surgery, counseling, post-operative treatment and 30 services; 31 3. refuse to refer the individual to a transplant center or other 32 related specialist for the purpose of evaluation or receipt of an organ 33 transplant; 34 4. refuse to place an individual on an organ transplant waiting list, 35 or placement of the individual at a lower-priority position on the list 36 than the position at which he or she would have been placed if not for 37 his or her disability; or 38 5. decline insurance coverage for any procedure associated with the 39 receipt of the anatomical gift, including post-transplantation care. 40 (b) Notwithstanding subdivision (a) of this section, a covered entity 41 may take an individual's disability into account when making treatment 42 or coverage recommendations or decisions, solely to the extent that the 43 physical or mental disability has been found by a physician or surgeon, 44 following an individualized evaluation of the potential recipient, to be 45 medically significant to the provision of the anatomical gift. The 46 provisions of this section shall not be deemed to require referrals or 47 recommendations for, or the performance of, medically inappropriate 48 organ transplants. 49 (c) If an individual has the necessary support system to assist the 50 individual in complying with post-transplant medical requirements, an 51 individual's inability to independently comply with those requirements 52 shall not be deemed to be medically significant for the purposes of 53 subdivision (b) of this section. 54 (d) A covered entity shall make reasonable modifications in policies, 55 practices, or procedures, when such modifications are necessary to make 56 services such as transplantation-related counseling, information, cover-A. 2123 4 1 age, or treatment available to qualified individuals with disabilities, 2 unless the entity can demonstrate that making such modifications would 3 fundamentally alter the nature of such services. 4 (e) A covered entity shall take such steps as may be necessary to 5 ensure that no qualified individual with a disability is denied services 6 such as transplantation-related counseling, information, coverage, or 7 treatment because of the absence of auxiliary aids and services, unless 8 the entity can demonstrate that taking such steps would fundamentally 9 alter the nature of the services being offered or would result in an 10 undue burden. 11 (f) A covered entity shall otherwise comply with the requirements of 12 Titles II and III of the Americans with Disabilities Act, 42 USC 12131, 13 and ADA Amendments Act of 2008. 14 (g) The provisions of this section shall apply to each part of the 15 organ transplant process. 16 § 35.07 Enforcement. 17 (a) The remedy for violations of this article shall be the same as 18 those available under Titles II and III of the Americans with Disabili- 19 ties Act, 42 USC 12131. 20 (b) The court shall accord priority on its calendar and expeditiously 21 proceed with an action brought to seek any remedy authorized by law for 22 purposes of enforcing compliance with the provisions of this article. 23 § 2. This act shall take effect immediately.