S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                   2881
 
                        2019-2020 Regular Sessions
 
                           I N  A S S E M B L Y
 
                             January 28, 2019
                                ___________
 
 Introduced by M. of A. DINOWITZ, JAFFEE, L. ROSENTHAL, HEVESI, WEPRIN --
   read once and referred to the Committee on Health
 
 AN  ACT to amend the public health law, in relation to the establishment
   of a program for familial dysautonomia,  Canavan's  disease  and  Tay-
   Sachs disease screening and counseling

   THE  PEOPLE OF THE STATE OF NEW YORK, REPRESENTED IN SENATE AND ASSEM-
 BLY, DO ENACT AS FOLLOWS:
 
   Section 1.  The public health law is amended by adding a  new  article
 27-DDD to read as follows:
                               ARTICLE  27-DDD
           PROGRAM FOR FAMILIAL DYSAUTONOMIA, CANAVAN'S DISEASE
              AND TAY-SACHS DISEASE SCREENING AND COUNSELING
 SECTION 2770. LEGISLATIVE FINDINGS AND DECLARATION OF PURPOSE.
         2771.  PROGRAM  FOR FAMILIAL DYSAUTONOMIA, CANAVAN'S DISEASE AND
                TAY-SACHS DISEASE SCREENING AND COUNSELING.
         2772. COMMISSIONER; FUNCTIONS, POWERS AND DUTIES.
         2773. COSTS.
         2774. VOLUNTARY PARTICIPATION.
         2774-A. APPLICATION; ADMINISTRATION AS TO GRANTS AND CONTRACTS.
         2774-B. CONFIDENTIALITY OF INFORMATION.
         2774-C. REPORTS.
   § 2770.   LEGISLATIVE FINDINGS AND DECLARATION OF  PURPOSE.    1.  THE
 LEGISLATURE HEREBY FINDS AND DECLARES:
   (A)  THAT  FAMILIAL  DYSAUTONOMIA,  CANAVAN'S  DISEASE  AND  TAY-SACHS
 DISEASE ARE DEBILITATING, INHERITABLE DISEASES THAT HAVE  AFFECTED  MANY
 CITIZENS OF THE STATE;
   (B)  THAT  FAMILIAL  DYSAUTONOMIA,  CANAVAN'S  DISEASE  AND  TAY-SACHS
 DISEASE ARE DEADLY AND TRAGIC BURDENS WHICH ARE LIKELY  TO  STRIKE  ONE-
 FOURTH  OF THE CHILDREN BORN TO PARENTS BOTH OF WHOM ARE FAMILIAL DYSAU-
 TONOMIA, CANAVAN'S DISEASE AND TAY-SACHS DISEASE CARRIERS;

  EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                       [ ] is old law to be omitted.
                                                            LBD00745-01-9
              

 A. 2881                             2
 
   (C)  THAT EFFORTS WITH RESPECT  TO  FAMILIAL  DYSAUTONOMIA,  CANAVAN'S
 DISEASE  AND  TAY-SACHS  DISEASE  MUST BE DIRECTED TOWARD THE EDUCATION,
 SCREENING,  AND  COUNSELING  OF  CARRIERS  OF   FAMILIAL   DYSAUTONOMIA,
 CANAVAN'S DISEASE AND TAY-SACHS DISEASE;
   (D)  THAT  SIMPLE  AND  INEXPENSIVE  SCREENING TESTS HAVE BEEN DEVISED
 WHICH IDENTIFY THOSE WHO HAVE THE DISEASES OR ARE FAMILIAL DYSAUTONOMIA,
 CANAVAN'S DISEASE AND TAY-SACHS DISEASE CARRIERS;
   (E) THAT PROGRAMS WITH RESPECT  TO  FAMILIAL  DYSAUTONOMIA,  CANAVAN'S
 DISEASE  AND TAY-SACHS DISEASE MUST BE BASED ENTIRELY UPON THE VOLUNTARY
 COOPERATION OF THE INDIVIDUALS INVOLVED;
   (F) THAT THE APPLICATION OF METHODS OF SCREENING AND  COUNSELING  WITH
 RESPECT  TO  FAMILIAL  DYSAUTONOMIA,  CANAVAN'S  DISEASE  AND  TAY-SACHS
 DISEASE DESERVE THE HIGHEST PRIORITY; AND
   (G) THAT THE ESTABLISHMENT OF FAMILIAL DYSAUTONOMIA, CANAVAN'S DISEASE
 AND TAY-SACHS DISEASE EDUCATION, SCREENING, AND COUNSELING PROGRAMS WILL
 BE COST BENEFICIAL TO THE CITIZENS OF THE STATE.
   2. IN ORDER TO PRESERVE AND PROTECT THE PUBLIC HEALTH AND WELFARE, THE
 LEGISLATURE HEREBY DECLARES  AS  ITS  PURPOSE  THE  ESTABLISHMENT  OF  A
 PROGRAM  FOR  FAMILIAL  DYSAUTONOMIA,  CANAVAN'S  DISEASE  AND TAY-SACHS
 DISEASE SCREENING AND COUNSELING.
   § 2771. PROGRAM FOR FAMILIAL DYSAUTONOMIA, CANAVAN'S DISEASE AND  TAY-
 SACHS  DISEASE  SCREENING AND COUNSELING.  THE COMMISSIONER SHALL ESTAB-
 LISH  WITHIN  THE  DEPARTMENT  A  PROGRAM  FOR  FAMILIAL   DYSAUTONOMIA,
 CANAVAN'S DISEASE AND TAY-SACHS DISEASE SCREENING AND COUNSELING FOR THE
 PURPOSES OF:
   1. THE ESTABLISHMENT AND OPERATION OF VOLUNTARY FAMILIAL DYSAUTONOMIA,
 CANAVAN'S   DISEASE  AND  TAY-SACHS  DISEASE  SCREENING  AND  COUNSELING
 PROGRAMS, PRIMARILY THROUGH OTHER EXISTING HEALTH PROGRAMS; AND
   2. THE DEVELOPMENT OF INFORMATION AND EDUCATIONAL  MATERIALS  RELATING
 TO  FAMILIAL  DYSAUTONOMIA, CANAVAN'S DISEASE AND TAY-SACHS DISEASE, AND
 THE DISSEMINATION OF SUCH INFORMATION AND MATERIALS TO PERSONS PROVIDING
 HEALTH CARE AND TO THE PUBLIC GENERALLY.
   § 2772. COMMISSIONER; FUNCTIONS, POWERS AND DUTIES.   IN CARRYING  OUT
 THE  PROVISIONS OF THIS ARTICLE, THE COMMISSIONER SHALL HAVE THE FOLLOW-
 ING FUNCTIONS, POWERS AND DUTIES:
   1. IN HIS OR  HER  DISCRETION,  TO  MAKE  GRANTS  TO  AND  ENTER  INTO
 CONTRACTS  WITH,  PUBLIC AND NONPROFIT PRIVATE ENTITIES FOR PROJECTS FOR
 THE ESTABLISHMENT AND  OPERATION  OF  VOLUNTARY  FAMILIAL  DYSAUTONOMIA,
 CANAVAN'S   DISEASE  AND  TAY-SACHS  DISEASE  SCREENING  AND  COUNSELING
 PROGRAMS;
   2. TO CARRY OUT A PROGRAM TO DEVELOP INFORMATION AND EDUCATIONAL MATE-
 RIALS RELATING TO FAMILIAL DYSAUTONOMIA, CANAVAN'S DISEASE AND TAY-SACHS
 DISEASE AND TO DISSEMINATE SUCH INFORMATION  AND  MATERIALS  TO  PERSONS
 PROVIDING HEALTH CARE AND TO THE PUBLIC GENERALLY;
   3.  TO  MAKE  GRANTS  TO  PUBLIC AND NONPROFIT PRIVATE ENTITIES AND TO
 ENTER INTO CONTRACTS WITH PUBLIC AND PRIVATE  ENTITIES  AND  INDIVIDUALS
 FOR  THE  PURPOSE OF EFFECTUATING THE DUTY PRESCRIBED BY SUBDIVISION TWO
 OF THIS SECTION;
   4. TO ADOPT, PROMULGATE, AMEND AND RESCIND SUITABLE  RULES  AND  REGU-
 LATIONS TO CARRY OUT THE PROVISIONS AND PURPOSES OF THIS ARTICLE; AND
   5.  TO EXERCISE AND PERFORM SUCH OTHER FUNCTIONS, POWERS AND DUTIES AS
 ARE CONTAINED IN THIS ARTICLE OR AS MAY FROM TIME TO TIME  BE  CONFERRED
 OR IMPOSED BY LAW.
   §  2773.  COSTS. COSTS INCURRED BY THE COMMISSIONER IN MAKING PAYMENTS
 PURSUANT TO GRANTS AND CONTRACTS  AUTHORIZED  BY  SUBDIVISIONS  ONE  AND
 THREE  OF SECTION TWENTY-SEVEN HUNDRED SEVENTY-TWO OF THIS ARTICLE SHALL

 A. 2881                             3
 
 BE PAYABLE, AFTER SUBMISSION OF A VOUCHER CERTIFIED BY THE COMMISSIONER,
 UPON AUDIT AND WARRANT OF THE COMPTROLLER FROM MONEYS MADE AVAILABLE FOR
 SUCH PURPOSE BY APPROPRIATION.
   §  2774.  VOLUNTARY PARTICIPATION. THE PARTICIPATION BY ANY INDIVIDUAL
 IN ANY PROGRAM OR PORTION THEREOF ESTABLISHED UNDER THIS  ARTICLE  SHALL
 BE  WHOLLY  VOLUNTARY AND SHALL NOT BE A PREREQUISITE TO ELIGIBILITY FOR
 OR RECEIPT OF ANY OTHER SERVICE OR ASSISTANCE FROM, OR TO  PARTICIPATION
 IN, ANY OTHER PROGRAM.
   §  2774-A. APPLICATION; ADMINISTRATION AS TO GRANTS AND CONTRACTS.  1.
 A GRANT AUTHORIZED BY SECTION TWENTY-SEVEN HUNDRED SEVENTY-TWO  OF  THIS
 ARTICLE  MAY  BE MADE UPON APPLICATION TO THE COMMISSIONER AT SUCH TIME,
 IN SUCH MANNER, UPON SUCH FORMS,  CONTAINING  AND  ACCOMPANIED  BY  SUCH
 INFORMATION,  AS  THE  COMMISSIONER  SHALL  DEEM NECESSARY AND, BY REGU-
 LATION, PRESCRIBE.
   2.  NOTWITHSTANDING THE PROVISIONS OF SUBDIVISION ONE OF THIS SECTION,
 ANY APPLICATION MADE PURSUANT TO THIS SECTION SHALL AT LEAST PROVIDE:
   (A)  THAT THE PROGRAMS AND ACTIVITIES FOR WHICH ASSISTANCE UNDER  THIS
 ARTICLE  IS  SOUGHT  WILL BE ADMINISTERED BY OR UNDER THE SUPERVISION OF
 THE APPLICANT;
   (B)  FOR STRICT CONFIDENTIALITY OF ALL TEST RESULTS, MEDICAL  RECORDS,
 AND  OTHER INFORMATION REGARDING SCREENING OR COUNSELING, EXCEPT FOR (I)
 SUCH INFORMATION AS THE PATIENT (OR HIS OR HER GUARDIAN) CONSENTS TO  BE
 RELEASED;  OR  (II)  STATISTICAL  DATA COMPILED WITHOUT REFERENCE TO THE
 IDENTITY OF ANY SUCH PATIENT;
   (C) FOR APPROPRIATE COMMUNITY REPRESENTATION IN  THE  DEVELOPMENT  AND
 OPERATION OF ANY PROGRAM FUNDED BY A GRANT UNDER THIS ARTICLE;
   (D)  IN  THE CASE OF AN APPLICATION FOR A GRANT AUTHORIZED BY SUBDIVI-
 SION ONE OF SECTION TWENTY-SEVEN HUNDRED SEVENTY-TWO  OF  THIS  ARTICLE,
 ASSURANCES  SATISFACTORY  TO THE COMMISSIONER THAT (I) THE SCREENING AND
 COUNSELING SERVICES TO BE PROVIDED  UNDER  THE  PROGRAM  FOR  WHICH  THE
 APPLICATION  IS  MADE  WILL  BE DIRECTED FIRST TO THE BLOOD RELATIVES OF
 KNOWN FAMILIAL DYSAUTONOMIA,  CANAVAN'S  DISEASE  OR  TAY-SACHS  DISEASE
 VICTIMS;  AND  SECOND, TO THE HIGH-RISK POPULATION GROUPS IN WHICH FAMI-
 LIAL DYSAUTONOMIA, CANAVAN'S DISEASE AND TAY-SACHS DISEASE  OCCURS  WITH
 GREATEST  FREQUENCY  AND ESPECIALLY TO THOSE PERSONS IN THESE GROUPS WHO
 ARE ENTERING THEIR CHILDBEARING YEARS; AND (II) APPROPRIATE ARRANGEMENTS
 HAVE BEEN MADE TO PROVIDE GENETIC COUNSELING  TO  PERSONS  FOUND  TO  BE
 FAMILIAL DYSAUTONOMIA, CANAVAN'S DISEASE OR TAY-SACHS CARRIERS;
   (E)  FOR  SUCH  FISCAL  CONTROL  AND FUND ACCOUNTING PROCEDURES AS THE
 COMMISSIONER MAY DEEM NECESSARY TO ASSURE  PROPER  DISBURSEMENT  OF  AND
 ACCOUNTING FOR FUNDS PAID TO THE APPLICANT PURSUANT TO THIS ARTICLE; AND
   (F)  FOR MAKING SUCH REPORTS IN SUCH FORM AND CONTAINING SUCH INFORMA-
 TION AS THE COMMISSIONER MAY, BY REGULATION, REASONABLY REQUIRE.
   3. IN MAKING OR ENTERING INTO ANY GRANT OR CONTRACT PURSUANT  TO  THIS
 ARTICLE, THE COMMISSIONER SHALL:
   (A)  TAKE  INTO  ACCOUNT  THE  NUMBER  OF  PERSONS TO BE SERVED BY THE
 PROGRAM SUPPORTED BY SUCH GRANT OR CONTRACT  AND  THE  EXTENT  TO  WHICH
 RAPID  AND  EFFECTIVE  USE  WILL  BE  MADE  OF  FUNDS UNDER THE GRANT OR
 CONTRACT; AND
   (B) GIVE PRIORITY TO PROGRAMS OPERATING IN AREAS WHICH THE COMMISSION-
 ER DETERMINES TO HAVE THE GREATEST NUMBER OF  PERSONS  IN  NEED  OF  THE
 SCREENING AND COUNSELING SERVICES PROVIDED UNDER SUCH PROGRAMS.
   §  2774-B.  CONFIDENTIALITY OF INFORMATION.  ALL TEST RESULTS, MEDICAL
 RECORDS AND  ANY  OTHER  INFORMATION  REGARDING  FAMILIAL  DYSAUTONOMIA,
 CANAVAN'S DISEASE AND TAY-SACHS DISEASE SCREENING OR COUNSELING ACQUIRED
 OR  MADE BY A PUBLIC OR PRIVATE ENTITY OR AN INDIVIDUAL UNDER THIS ARTI-

 A. 2881                             4
 
 CLE SHALL BE KEPT CONFIDENTIAL, AND SHALL NOT BE ADMISSIBLE AS  EVIDENCE
 IN  AN  ACTION  OR PROCEEDING IN ANY COURT OR BEFORE ANY OTHER TRIBUNAL,
 BOARD, AGENCY OR PERSON; PROVIDED, HOWEVER, THAT THE PROVISIONS OF  THIS
 SECTION SHALL NOT APPLY TO:
   1.  SUCH  INFORMATION AS THE PATIENT, OR HIS OR HER GUARDIAN, CONSENTS
 TO BE RELEASED; OR
   2. STATISTICAL DATA COMPILED WITHOUT REFERENCE TO THE IDENTITY OF  ANY
 SUCH PATIENT; OR
   3.  SUCH  INFORMATION  AS  IS  RELEASED BY WRITTEN ORDER OF A COURT OF
 RECORD, ISSUED BY SUCH COURT AFTER RECEIPT OF AN APPLICATION  ON  APPRO-
 PRIATE  NOTICE  AND AN OPPORTUNITY FOR ALL RELEVANT PARTIES TO BE HEARD,
 SHOWING GOOD CAUSE FOR THE FOLLOWING REASONS:
   (A) OTHER WAYS OF OBTAINING THE INFORMATION ARE NOT AVAILABLE OR WOULD
 BE INEFFECTIVE; AND
   (B) THERE IS A REASONABLE LIKELIHOOD THAT THE  RECORDS  WILL  DISCLOSE
 INFORMATION OF SUBSTANTIAL VALUE IN A CIVIL AND/OR CRIMINAL PROCEEDING.
   IN  ANY  APPLICATION  BROUGHT UNDER THIS SUBDIVISION, UNLESS THE COURT
 ORDERS ALL PAPERS FILED UNDER SEAL, THE SUBJECT OF THE RECORD  SHALL  BE
 IDENTIFIED  ONLY  BY FICTITIOUS NAME, AND THE APPLICATION AND RESPONDING
 PAPERS SHALL NOT CONTAIN OR OTHERWISE DISCLOSE THE SUBJECT'S IDENTITY OR
 OTHER CONFIDENTIAL INFORMATION.
   § 2774-C. REPORTS. 1. THE COMMISSIONER SHALL PREPARE AND SUBMIT TO THE
 GOVERNOR AND THE LEGISLATURE AS SOON AS PRACTICABLE AFTER THE  ENACTMENT
 OF  THIS ARTICLE, BUT NO LATER THAN ONE YEAR FOLLOWING SUCH ENACTMENT, A
 COMPREHENSIVE REPORT ON THE ADMINISTRATION OF THIS ARTICLE.
   2. SUCH REPORT  SHALL  CONTAIN  SUCH  RECOMMENDATIONS  FOR  ADDITIONAL
 LEGISLATION AS THE COMMISSIONER DEEMS NECESSARY.
   § 2. This act shall take effect on the one hundred eightieth 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 and directed  to
 be made and completed on or before such effective date.