Bill Text: NY A02881 | 2019-2020 | General Assembly | Amended


Bill Title: Authorizes the department of health to establish a program for familial dysautonomia, Canavan's and Tay-Sachs disease screening and counseling and to provide grants and to enter into contracts with public and non-profit private entities to assist in such program; and provides that participation in such program shall be voluntary and all information shall be confidential.

Spectrum: Partisan Bill (Democrat 5-0)

Status: (Introduced - Dead) 2020-05-04 - print number 2881a [A02881 Detail]

Download: New_York-2019-A02881-Amended.html



                STATE OF NEW YORK
        ________________________________________________________________________

                                         2881--A

                               2019-2020 Regular Sessions

                   IN ASSEMBLY

                                    January 28, 2019
                                       ___________

        Introduced by M. of A. DINOWITZ, JAFFEE, L. ROSENTHAL, HEVESI, WEPRIN --
          read  once  and  referred to the Committee on Health -- recommitted to
          the Committee on Health in accordance with Assembly Rule 3, sec. 2  --
          committee  discharged,  bill amended, ordered reprinted as amended and
          recommitted to said committee

        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:

     1    Section  1.  The  public health law is amended by adding a new section
     2  206-c to read as follows:
     3    § 206-c. 1. Program for familial dysautonomia, Canavan's  disease  and
     4  Tay-Sachs  disease  screening  and  counseling.  The  commissioner shall
     5  establish within the department, within amounts appropriated therefor, a
     6  program for  familial  dysautonomia,  Canavan's  disease  and  Tay-Sachs
     7  disease screening and counseling for the purposes of establishing volun-
     8  tary  familial  dysautonomia,  Canavan's  disease  and Tay-Sachs disease
     9  screening and counseling  programs,  primarily  through  other  existing
    10  health programs.
    11    2.  The  commissioner may make grants to and enter into contracts with
    12  public and nonprofit private entities for the establishment  and  opera-
    13  tion  of programs under this section.  The commissioner shall promulgate
    14  regulations pursuant to this section. In making grants authorized  under
    15  this section the commissioner shall give priority to programs that:
    16    (a)    provide  services  first  to  blood relatives of known familial
    17  dysautonomia, Canavan's disease or Tay-Sachs disease victims, and second
    18  to high-risk population groups in which familial dysautonomia, Canavan's
    19  disease and Tay-Sachs disease   occur   with greatest   frequency    and
    20  especially to those persons in such groups who are entering their child-
    21  bearing years; and

         EXPLANATION--Matter in italics (underscored) is new; matter in brackets
                              [ ] is old law to be omitted.
                                                                   LBD00745-02-0

        A. 2881--A                          2

     1    (b)  operate  in  areas  which the commissioner determines to have the
     2  greatest number of  persons  in  need of the  screening  and  counseling
     3  services provided under such programs.
     4    3.  The  participation  by  any  individual  in any program under this
     5  section shall be wholly voluntary and shall not  be  a  prerequisite  to
     6  eligibility for, or receipt of, any other service or assistance from, or
     7  to  participation  in,  any  other  program.  All  test results, medical
     8  records and  any  other  information  regarding  familial  dysautonomia,
     9  Canavan's disease and Tay-Sachs disease screening or counseling acquired
    10  or  made  by  a  public  or  private  entity or an individual under this
    11  section shall be kept  confidential  and  shall  not  be  admissible  as
    12  evidence  in  an  action  or proceeding in any court or before any other
    13  tribunal,  board,  agency  or  person;  provided,  however,   that   the
    14  provisions of this subdivision shall not apply to:
    15    (a)  such information as the patient, or his or her guardian, consents
    16  to be released; or
    17    (b) statistical data compiled without reference to the identity of any
    18  such patient; or
    19    (c) such information as is released by written order  of  a  court  of
    20  competent  jurisdiction, issued by such court after receipt of an appli-
    21  cation on appropriate notice and an opportunity for all relevant parties
    22  to be heard, showing good cause for the following reasons:
    23    (i) other ways of obtaining the information are not available or would
    24  be ineffective; or
    25    (ii) there is a reasonable likelihood that the records  will  disclose
    26  information of substantial value in a civil and/or criminal proceeding.
    27    In  any  application  brought  under  this paragraph, unless the court
    28  orders all papers filed under seal, the subject of the record  shall  be
    29  identified  only  by fictitious name, and the application and responding
    30  papers shall not contain or otherwise disclose the subject's identity or
    31  other confidential information.
    32    4. On or before July first, two thousand twenty-two, the  commissioner
    33  shall issue a report on the administration of this program to the gover-
    34  nor,  the  temporary president of the senate, the minority leader of the
    35  senate, the speaker of the assembly, and  the  minority  leader  of  the
    36  assembly.  Such report shall contain such recommendations for additional
    37  legislation as the commissioner deems necessary.
    38    § 2. Subdivision 1 of section 207 of the public health law is  amended
    39  by adding a new paragraph (p) to read as follows:
    40    (p)  Familial  dysautonomia,  Canavan's  disease and Tay-Sachs disease
    41  education, screening, and counseling.
    42    § 3. This act shall take effect on the one hundred eightieth day after
    43  it shall have become a law. Effective immediately, the addition,  amend-
    44  ment and/or repeal of any rule or regulation necessary for the implemen-
    45  tation  of this act on its effective date are authorized and directed to
    46  be made and completed on or before such effective date.
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