S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                    455
 
                        2019-2020 Regular Sessions
 
                             I N  S E N A T E
 
                                (PREFILED)
 
                              January 9, 2019
                                ___________
 
 Introduced  by  Sen.  ORTT  --  read twice and ordered printed, and when
   printed to be committed to the Committee on Mental Health and Develop-
   mental Disabilities
 
 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
 
  EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
              

                       [ ] is old law to be omitted.
                                                            LBD01781-01-9

 S. 455                              2
 
 RECEIVE AN ORGAN TRANSPLANT,  TRANSPLANT  CENTERS  THAT  PARTICIPATE  IN
 MEDICARE,  MEDICAID,  AND OTHER FEDERAL FUNDING PROGRAMS ARE REQUIRED TO
 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;

 S. 455                              3
 
   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;
   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.

 S. 455                              4
 
   (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-
 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.