S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                   4138
 
                        2023-2024 Regular Sessions
 
                           I N  A S S E M B L Y
 
                             February 10, 2023
                                ___________
 
 Introduced by M. of A. McMAHON, WALLACE, CONRAD, SIMON, STIRPE, GUNTHER,
   THIELE,  BRONSON,  HEVESI,  SEAWRIGHT, DICKENS, GONZALEZ-ROJAS, GLICK,
   ZEBROWSKI -- read once and referred to the Committee on Mental Health
 
 AN ACT to amend the mental hygiene law, in  relation  to  Down  syndrome
   diagnosis awareness

   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  section
 13.44 to read as follows:
 § 13.44 DOWN SYNDROME DIAGNOSIS AWARENESS.
   (A)  FOR  PURPOSES OF THIS SECTION, THE FOLLOWING TERMS SHALL HAVE THE
 FOLLOWING MEANINGS:
   (1) "HEALTH CARE  PRACTITIONER"  MEANS  A  MEDICAL  PROFESSIONAL  THAT
 PROVIDES PRENATAL OR POSTNATAL CARE AND ADMINISTERS OR REQUESTS ADMINIS-
 TRATION  OF A DIAGNOSTIC OR SCREENING TEST TO A PREGNANT WOMAN OR INFANT
 THAT DETECTS FOR DOWN SYNDROME; AND
   (2) "DOWN SYNDROME" MEANS A CHROMOSOMAL CONDITION WITH EITHER AN EXTRA
 CHROMOSOME TWENTY-ONE, IN WHOLE OR IN PART, OR AN EFFECTIVE TRISOMY  FOR
 CHROMOSOME  TWENTY-ONE.  TRISOMY TWENTY-ONE IS THE MEDICAL TERM FOR DOWN
 SYNDROME.
   (B) A HEALTH CARE PRACTITIONER WHO ORDERS TESTS FOR A  PREGNANT  WOMAN
 OR INFANT TO SCREEN FOR DOWN SYNDROME SHALL PROVIDE THE FOLLOWING INFOR-
 MATION  TO  SUCH  PREGNANT  WOMAN  OR  THE  INFANT'S PARENT IF SUCH TEST
 REVEALS A POSITIVE RESULT:
   (1) UP-TO-DATE AND EVIDENCE-BASED INFORMATION ABOUT DOWN SYNDROME THAT
 HAS BEEN REVIEWED BY MEDICAL EXPERTS AND NATIONAL DOWN  SYNDROME  ORGAN-
 IZATIONS.  THE  INFORMATION MUST BE PROVIDED IN A WRITTEN OR AN ALTERNA-
 TIVE FORMAT AND MUST INCLUDE THE FOLLOWING:
   (I) EXPECTED PHYSICAL, DEVELOPMENTAL,  EDUCATIONAL,  AND  PSYCHOSOCIAL
 OUTCOMES;
   (II) LIFE EXPECTANCY;

  EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                       [ ] is old law to be omitted.
                                                            LBD06931-01-3
              

 A. 4138                             2
 
   (III) THE CLINICAL COURSE DESCRIPTION;
   (IV) EXPECTED INTELLECTUAL AND FUNCTIONAL DEVELOPMENT;
   (V)  TREATMENT OPTIONS AVAILABLE FOR THE PARTICULAR SYNDROME FOR WHICH
 THE TEST WAS POSITIVE; AND
   (VI) ANY OTHER INFORMATION THE OFFICE DEEMS NECESSARY.
   (2) CONTACT  INFORMATION  FOR  NONPROFIT  ORGANIZATIONS  THAT  PROVIDE
 INFORMATION  AND  SUPPORT  SERVICES  FOR DOWN SYNDROME INCLUDING BUT NOT
 LIMITED TO:
   (I) INFORMATION HOTLINES SPECIFIC TO DOWN SYNDROME;
   (II) RELEVANT RESOURCE CENTERS OR CLEARINGHOUSES; AND
   (III) NATIONAL AND LOCAL DOWN SYNDROME ORGANIZATIONS.
   (C) (1) THE COMMISSIONER SHALL PROVIDE WRITTEN INFORMATION  TO  HEALTH
 CARE  PRACTITIONERS  NECESSARY  TO  IMPLEMENT  SUBDIVISION  (B)  OF THIS
 SECTION.
   (2) ADDITIONALLY, THE COMMISSIONER SHALL POST SUCH INFORMATION ON  THE
 OFFICE'S WEBSITE.
   (3)  THE  COMMISSIONER  SHALL FOLLOW EXISTING PRACTICES TO ENSURE THAT
 THE INFORMATION IS CULTURALLY AND  LINGUISTICALLY  APPROPRIATE  FOR  ALL
 RECIPIENTS.
   (4) THE COMMISSIONER SHALL MEET ANNUALLY WITH REPRESENTATIVES FROM THE
 DOWN SYNDROME COMMUNITY TO ENSURE THE INFORMATION THAT IS MADE AVAILABLE
 BY THE DEPARTMENT IS CURRENT.
   § 2. This act shall take effect on the one hundred twentieth day after
 it  shall have become a law. Effective immediately, the addition, amend-
 ment and/or repeal of any rule or regulation necessary for the implemen-
 tation of this act on its effective date are authorized to be  made  and
 completed on or before such effective date.