S T A T E   O F   N E W   Y O R K
________________________________________________________________________

                                  1135

                       2009-2010 Regular Sessions

                          I N  A S S E M B L Y

                               (PREFILED)

                             January 7, 2009
                               ___________

Introduced  by  M.  of  A.  DINOWITZ, JACOBS, JAFFEE, HEVESI, LANCMAN --
  Multi-Sponsored by -- M. of  A.    ALFANO,  BARRA,  BRODSKY,  McENENY,
  McKEVITT,  WEINSTEIN  --  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.
  S  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

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

A                                                          LBD02764-01-9

A. 1135                             2

ONE-FOURTH OF THE CHILDREN BORN TO PARENTS BOTH  OF  WHOM  ARE  FAMILIAL
DYSAUTONOMIA, CANAVAN'S DISEASE AND TAY-SACHS DISEASE CARRIERS;
  (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.
  S  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.
  S  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.

A. 1135                             3

  S 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
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.
  S  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.
  S  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.

A. 1135                             4

  S  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-
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.
  S 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.
  S 2. This act shall take effect on the one hundred eightieth day after
it shall have become a law, provided, however, that effective immediate-
ly, the addition, amendment and/or repeal  of  any  rule  or  regulation
necessary  for  the implementation of this act on its effective date are
authorized and directed to be made  and  completed  on  or  before  such
effective date.