S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                    779
 
                        2023-2024 Regular Sessions
 
                             I N  S E N A T E
 
                              January 6, 2023
                                ___________
 
 Introduced  by  Sen.  ORTT  --  read twice and ordered printed, and when
   printed to be committed to the Committee 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:
 
   Section  1.  The mental hygiene law is amended by adding a new article
 35 to read as follows:
                                ARTICLE 35
                        ORGAN DONATION FAIRNESS ACT
 SECTION 35.01 LEGISLATIVE INTENT.
         35.03 DEFINITIONS.
         35.05 DISCRIMINATION PROHIBITED.
         35.07 ENFORCEMENT.
 § 35.01 LEGISLATIVE INTENT.
   THE LEGISLATURE FINDS THAT:
   (A) A MENTAL OR PHYSICAL DISABILITY DOES NOT DIMINISH A PERSON'S RIGHT
 TO HEALTH CARE;
   (B) THE AMERICANS WITH DISABILITIES ACT OF 1990, 42 USC 12101, PROHIB-
 ITS DISCRIMINATION AGAINST PERSONS WITH DISABILITIES, YET MANY  INDIVID-
 UALS  WITH  DISABILITIES  STILL  EXPERIENCE  DISCRIMINATION IN ACCESSING
 CRITICAL HEALTH CARE SERVICES;
   (C) INDIVIDUALS WITH MENTAL AND  PHYSICAL  DISABILITIES  HAVE  HISTOR-
 ICALLY  BEEN  DENIED  LIFE-SAVING ORGAN TRANSPLANTS BASED ON ASSUMPTIONS
 THAT THEIR LIVES ARE LESS WORTHY, THAT THEY ARE INCAPABLE  OF  COMPLYING
 WITH  POST-TRANSPLANT  MEDICAL  REGIMENS,  OR  THAT  THEY  LACK ADEQUATE
 SUPPORT SYSTEMS TO ENSURE SUCH COMPLIANCE;
   (D) ALTHOUGH  ORGAN  TRANSPLANT  CENTERS  MUST  CONSIDER  MEDICAL  AND
 PSYCHOSOCIAL  CRITERIA  WHEN  DETERMINING  IF  A  PATIENT IS SUITABLE TO
 RECEIVE AN ORGAN TRANSPLANT,  TRANSPLANT  CENTERS  THAT  PARTICIPATE  IN
 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.
                                                            LBD03560-01-3
              

 S. 779                              2
 
 USE PATIENT SELECTION CRITERIA THAT RESULT IN A FAIR AND NON-DISCRIMINA-
 TORY DISTRIBUTION OF ORGANS; AND
   (E)  NEW  YORK  RESIDENTS IN NEED OF ORGAN TRANSPLANTS ARE ENTITLED TO
 ASSURANCES THAT THEY WILL NOT ENCOUNTER DISCRIMINATION ON THE BASIS OF A
 DISABILITY.
 § 35.03 DEFINITIONS.
   AS USED IN THIS ARTICLE:
   (A) THE TERM "DISABILITY" SHALL HAVE THE SAME MEANING SET FORTH IN THE
 AMERICANS WITH DISABILITIES ACT OF 1990 AS AMENDED BY THE ADA AMENDMENTS
 ACT OF 2008, AT 42 USC 12102.
   (B) THE TERM "AUXILIARY AIDS AND SERVICES" SHALL INCLUDE:
   1. QUALIFIED INTERPRETERS OR OTHER EFFECTIVE METHODS OF MAKING AURALLY
 DELIVERED MATERIALS AVAILABLE TO INDIVIDUALS WITH HEARING IMPAIRMENTS;
   2. QUALIFIED READERS, TAPED  TEXTS,  OR  OTHER  EFFECTIVE  METHODS  OF
 MAKING VISUALLY DELIVERED MATERIALS AVAILABLE TO INDIVIDUALS WITH VISUAL
 IMPAIRMENTS;
   3.  PROVISION  OF INFORMATION IN A FORMAT THAT IS ACCESSIBLE FOR INDI-
 VIDUALS WITH COGNITIVE,  NEUROLOGICAL,  DEVELOPMENTAL,  OR  INTELLECTUAL
 DISABILITIES;
   4. PROVISION OF SUPPORTED DECISION MAKING SERVICES;
   5. ACQUISITION OR MODIFICATION OF EQUIPMENT OR DEVICES; AND
   6. OTHER SIMILAR SERVICES AND ACTIONS.
   (C) THE TERM "QUALIFIED INDIVIDUAL" SHALL MEAN AN INDIVIDUAL WHO, WITH
 OR WITHOUT THE SUPPORT NETWORKS AVAILABLE TO THEM, PROVISION OF AUXILIA-
 RY  AIDS  AND SERVICES, OR REASONABLE MODIFICATIONS TO POLICIES OR PRAC-
 TICES, MEETS THE ESSENTIAL ELIGIBILITY REQUIREMENTS FOR THE  RECEIPT  OF
 AN ANATOMICAL GIFT.
   (D) THE TERM "REASONABLE MODIFICATIONS TO POLICIES OR PRACTICES" SHALL
 INCLUDE:
   1.  COMMUNICATION WITH INDIVIDUALS RESPONSIBLE FOR SUPPORTING AN INDI-
 VIDUAL WITH POST-SURGICAL AND POST-TRANSPLANTATION CARE, INCLUDING MEDI-
 CATION; AND
   2. CONSIDERATION OF SUPPORT  NETWORKS  AVAILABLE  TO  THE  INDIVIDUAL,
 INCLUDING  FAMILY,  FRIENDS,  AND  HOME  AND  COMMUNITY-BASED  SERVICES,
 INCLUDING HOME AND COMMUNITY-BASED  SERVICES  FUNDED  THROUGH  MEDICAID,
 MEDICARE,  ANOTHER  HEALTH  PLAN IN WHICH THE INDIVIDUAL IS ENROLLED, OR
 ANY PROGRAM OR SOURCE OF FUNDING AVAILABLE TO THE INDIVIDUAL, IN  DETER-
 MINING  WHETHER  THE  INDIVIDUAL  IS ABLE TO COMPLY WITH POST-TRANSPLANT
 MEDICAL REQUIREMENTS.
   (E) THE TERM "ANATOMICAL GIFT" SHALL MEAN A DONATION OF ALL OR PART OF
 A HUMAN BODY TO TAKE EFFECT AFTER THE DONOR'S DEATH FOR THE  PURPOSE  OF
 TRANSPLANTATION OR TRANSFUSION.
   (F)  THE  TERM  "ORGAN  TRANSPLANT"  SHALL MEAN THE TRANSPLANTATION OR
 TRANSFUSION OF A PART OF A HUMAN BODY INTO THE BODY OF ANOTHER  FOR  THE
 PURPOSE OF TREATING OR CURING A MEDICAL CONDITION.
   (G)  THE  TERM  "SUPPORTED DECISION MAKING" SHALL INCLUDE THE USE OF A
 SUPPORT PERSON OR PERSONS IN ORDER TO ASSIST  AN  INDIVIDUAL  IN  MAKING
 MEDICAL  DECISIONS, COMMUNICATE INFORMATION TO THE INDIVIDUAL, OR ASCER-
 TAIN AN INDIVIDUAL'S WISHES, INCLUDING:
   1. INCLUSION OF THE INDIVIDUAL'S ATTORNEY-IN-FACT, HEALTH CARE  PROXY,
 OR  ANY  PERSON  OF  THE INDIVIDUAL'S CHOICE IN COMMUNICATIONS ABOUT THE
 INDIVIDUAL'S MEDICAL CARE;
   2. PERMITTING THE INDIVIDUAL TO DESIGNATE A PERSON OF THEIR CHOICE FOR
 THE PURPOSES OF SUPPORTING THAT INDIVIDUAL IN COMMUNICATING,  PROCESSING
 INFORMATION, OR MAKING MEDICAL DECISIONS;
 S. 779                              3

   3. PROVISION OF AUXILIARY AIDS AND SERVICES TO FACILITATE THE INDIVID-
 UAL'S  ABILITY  TO  COMMUNICATE  AND PROCESS HEALTH-RELATED INFORMATION,
 INCLUDING THE USE OF ASSISTIVE COMMUNICATION TECHNOLOGY;
   4.  PROVISION  OF INFORMATION TO PERSONS DESIGNATED BY THE INDIVIDUAL,
 CONSISTENT WITH THE PROVISIONS OF THE HEALTH INSURANCE  PORTABILITY  AND
 ACCOUNTABILITY  ACT  OF 1996, 42 USC 1301, AND OTHER APPLICABLE LAWS AND
 REGULATIONS GOVERNING DISCLOSURE OF HEALTH INFORMATION;
   5. PROVISION OF HEALTH INFORMATION IN A FORMAT THAT IS READILY  UNDER-
 STANDABLE BY THE INDIVIDUAL; AND
   6.  IF THE INDIVIDUAL HAS A COURT-APPOINTED GUARDIAN OR OTHER INDIVID-
 UAL RESPONSIBLE FOR MAKING MEDICAL DECISIONS ON BEHALF OF  THE  INDIVID-
 UAL, ANY MEASURES TO ENSURE THAT THE INDIVIDUAL IS INCLUDED IN DECISIONS
 INVOLVING  HIS  OR HER OWN HEALTH CARE AND THAT MEDICAL DECISIONS ARE IN
 ACCORDANCE WITH THE INDIVIDUAL'S OWN EXPRESSED INTERESTS.
   (H) THE TERM "COVERED ENTITY" SHALL MEAN:
   1. ANY LICENSED PROVIDER OF HEALTH CARE SERVICES,  INCLUDING  LICENSED
 HEALTH  CARE PRACTITIONERS, HOSPITALS, NURSING FACILITIES, LABORATORIES,
 INTERMEDIATE CARE FACILITIES, PSYCHIATRIC RESIDENTIAL TREATMENT  FACILI-
 TIES,  INSTITUTIONS  FOR  INDIVIDUALS WITH INTELLECTUAL OR DEVELOPMENTAL
 DISABILITIES, AND PRISON HEALTH CENTERS; OR
   2. ANY ENTITY RESPONSIBLE  FOR  MATCHING  ANATOMICAL  GIFT  DONORS  TO
 POTENTIAL RECIPIENTS.
 § 35.05 DISCRIMINATION PROHIBITED.
   (A)  A  COVERED  ENTITY  SHALL NOT, SOLELY ON THE BASIS OF A QUALIFIED
 INDIVIDUAL'S MENTAL OR PHYSICAL DISABILITY:
   1. DEEM AN INDIVIDUAL INELIGIBLE TO  RECEIVE  AN  ANATOMICAL  GIFT  OR
 ORGAN TRANSPLANT;
   2. DENY MEDICAL AND RELATED SERVICES RELATED TO ORGAN TRANSPLANTATION,
 INCLUDING  EVALUATION, SURGERY, COUNSELING, POST-OPERATIVE TREATMENT AND
 SERVICES;
   3. REFUSE TO REFER THE INDIVIDUAL TO  A  TRANSPLANT  CENTER  OR  OTHER
 RELATED  SPECIALIST FOR THE PURPOSE OF EVALUATION OR RECEIPT OF AN ORGAN
 TRANSPLANT;
   4. REFUSE TO PLACE AN INDIVIDUAL ON AN ORGAN TRANSPLANT WAITING  LIST,
 OR  PLACEMENT OF THE INDIVIDUAL AT A LOWER-PRIORITY POSITION ON THE LIST
 THAN THE POSITION AT WHICH HE OR SHE WOULD HAVE BEEN PLACED IF  NOT  FOR
 HIS OR HER DISABILITY; OR
   5.  DECLINE  INSURANCE  COVERAGE FOR ANY PROCEDURE ASSOCIATED WITH THE
 RECEIPT OF THE ANATOMICAL GIFT, INCLUDING POST-TRANSPLANTATION CARE.
   (B) NOTWITHSTANDING SUBDIVISION (A) OF THIS SECTION, A COVERED  ENTITY
 MAY  TAKE  AN INDIVIDUAL'S DISABILITY INTO ACCOUNT WHEN MAKING TREATMENT
 OR COVERAGE RECOMMENDATIONS OR DECISIONS, SOLELY TO THE EXTENT THAT  THE
 PHYSICAL  OR MENTAL DISABILITY HAS BEEN FOUND BY A PHYSICIAN OR SURGEON,
 FOLLOWING AN INDIVIDUALIZED EVALUATION OF THE POTENTIAL RECIPIENT, TO BE
 MEDICALLY SIGNIFICANT TO THE  PROVISION  OF  THE  ANATOMICAL  GIFT.  THE
 PROVISIONS  OF  THIS SECTION SHALL NOT BE DEEMED TO REQUIRE REFERRALS OR
 RECOMMENDATIONS FOR, OR  THE  PERFORMANCE  OF,  MEDICALLY  INAPPROPRIATE
 ORGAN TRANSPLANTS.
   (C)  IF  AN  INDIVIDUAL HAS THE NECESSARY SUPPORT SYSTEM TO ASSIST THE
 INDIVIDUAL IN COMPLYING WITH POST-TRANSPLANT  MEDICAL  REQUIREMENTS,  AN
 INDIVIDUAL'S  INABILITY  TO INDEPENDENTLY COMPLY WITH THOSE REQUIREMENTS
 SHALL NOT BE DEEMED TO BE MEDICALLY  SIGNIFICANT  FOR  THE  PURPOSES  OF
 SUBDIVISION (B) OF THIS SECTION.
   (D)  A COVERED ENTITY SHALL MAKE REASONABLE MODIFICATIONS IN POLICIES,
 PRACTICES, OR PROCEDURES, WHEN SUCH MODIFICATIONS ARE NECESSARY TO  MAKE
 SERVICES SUCH AS TRANSPLANTATION-RELATED COUNSELING, INFORMATION, COVER-
 S. 779                              4

 AGE,  OR TREATMENT AVAILABLE TO QUALIFIED INDIVIDUALS WITH DISABILITIES,
 UNLESS THE ENTITY CAN DEMONSTRATE THAT MAKING SUCH  MODIFICATIONS  WOULD
 FUNDAMENTALLY ALTER THE NATURE OF SUCH SERVICES.
   (E)  A  COVERED  ENTITY  SHALL  TAKE SUCH STEPS AS MAY BE NECESSARY TO
 ENSURE THAT NO QUALIFIED INDIVIDUAL WITH A DISABILITY IS DENIED SERVICES
 SUCH AS TRANSPLANTATION-RELATED COUNSELING,  INFORMATION,  COVERAGE,  OR
 TREATMENT  BECAUSE OF THE ABSENCE OF AUXILIARY AIDS AND SERVICES, UNLESS
 THE ENTITY CAN DEMONSTRATE THAT TAKING SUCH  STEPS  WOULD  FUNDAMENTALLY
 ALTER  THE  NATURE  OF  THE SERVICES BEING OFFERED OR WOULD RESULT IN AN
 UNDUE BURDEN.
   (F) A COVERED ENTITY SHALL OTHERWISE COMPLY WITH THE  REQUIREMENTS  OF
 TITLES  II AND III OF THE AMERICANS WITH DISABILITIES ACT, 42 USC 12131,
 AND ADA AMENDMENTS ACT OF 2008.
   (G) THE PROVISIONS OF THIS SECTION SHALL APPLY TO  EACH  PART  OF  THE
 ORGAN TRANSPLANT PROCESS.
 § 35.07 ENFORCEMENT.
   (A)  THE  REMEDY  FOR  VIOLATIONS OF THIS ARTICLE SHALL BE THE SAME AS
 THOSE AVAILABLE UNDER TITLES II AND III OF THE AMERICANS WITH  DISABILI-
 TIES ACT, 42 USC 12131.
   (B)  THE COURT SHALL ACCORD PRIORITY ON ITS CALENDAR AND EXPEDITIOUSLY
 PROCEED WITH AN ACTION BROUGHT TO SEEK ANY REMEDY AUTHORIZED BY LAW  FOR
 PURPOSES OF ENFORCING COMPLIANCE WITH THE PROVISIONS OF THIS ARTICLE.
   § 2. This act shall take effect immediately.