Bill Text: NY S00593 | 2023-2024 | General Assembly | Introduced

NOTE: There are more recent revisions of this legislation. Read Latest Draft

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Bill Title: Creates a Down syndrome awareness program to provide up-to-date and evidence-based information on Down syndrome to health care providers who order tests for a pregnant woman or infants to screen for Down syndrome.

Spectrum: Partisan Bill (Republican 5-0)

Status: (Introduced) 2024-05-30 - SUBSTITUTED BY A4138A [S00593 Detail]

Download: New_York-2023-S00593-Introduced.html

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                STATE OF NEW YORK
        ________________________________________________________________________

                                           593

                               2023-2024 Regular Sessions

                    IN SENATE

                                     January 5, 2023
                                       ___________

        Introduced  by  Sen.  ORTT  --  read twice and ordered printed, and when
          printed to be committed 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:

     1    Section 1. The mental hygiene law is amended by adding a  new  section
     2  13.44 to read as follows:
     3  § 13.44 Down syndrome diagnosis awareness.
     4    (a)  For  purposes of this section, the following terms shall have the
     5  following meanings:
     6    (1) "Health care  practitioner"  means  a  medical  professional  that
     7  provides prenatal or postnatal care and administers or requests adminis-
     8  tration  of a diagnostic or screening test to a pregnant woman or infant
     9  that detects for Down syndrome; and
    10    (2) "Down syndrome" means a chromosomal condition caused by  an  error
    11  in  cell  division  that  results in the presence of an extra or partial
    12  copy of chromosome twenty-one.
    13    (b) A health care practitioner who orders tests for a  pregnant  woman
    14  or infant to screen for Down syndrome shall provide the following infor-
    15  mation  to  such  pregnant  woman  or  the  infant's parent if such test
    16  reveals a positive result:
    17    (1) Up-to-date and evidence-based information about Down syndrome that
    18  has been reviewed by medical experts and national Down  syndrome  organ-
    19  izations.  The  information must be provided in a written or an alterna-
    20  tive format and must include the following:
    21    (i) expected physical, developmental,  educational,  and  psychosocial
    22  outcomes;
    23    (ii) life expectancy;
    24    (iii) the clinical course description;
    25    (iv) expected intellectual and functional development;

         EXPLANATION--Matter in italics (underscored) is new; matter in brackets
                              [ ] is old law to be omitted.
                                                                   LBD03344-01-3
        S. 593                              2

     1    (v)  treatment options available for the particular syndrome for which
     2  the test was positive; and
     3    (vi) any other information the office deems necessary.
     4    (2)  Contact  information  for  nonprofit  organizations  that provide
     5  information and support services for Down  syndrome  including  but  not
     6  limited to:
     7    (i) information hotlines specific to Down syndrome;
     8    (ii) relevant resource centers or clearinghouses; and
     9    (iii) national and local Down syndrome organizations.
    10    (c)  (1)  The commissioner shall provide written information to health
    11  care practitioners  necessary  to  implement  subdivision  (b)  of  this
    12  section.
    13    (2)  Additionally, the commissioner shall post such information on the
    14  office's website.
    15    (3) The commissioner shall follow existing practices  to  ensure  that
    16  the  information  is  culturally  and linguistically appropriate for all
    17  recipients.
    18    (4) Any local or national  organization  that  provides  education  or
    19  services  related  to  Down  syndrome, may request that the commissioner
    20  include the organization's informational material and  contact  informa-
    21  tion  on  the office's website. Once a request is made, the commissioner
    22  may add the information to the website.
    23    § 2. This act shall take effect on the ninetieth day  after  it  shall
    24  have become a law. Effective immediately, the addition, amendment and/or
    25  repeal  of  any  rule  or regulation necessary for the implementation of
    26  this act on its effective date are authorized to be made  and  completed
    27  on or before such effective date.