New York State Assembly

 
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A04138 Summary:

A04138 Actions:

A04138 Committee Votes:

Committee:HEALTH   Chair:Paulin      
DATE:05/23/2023AYE/NAY:26/0  Action: Favorable refer to committee Ways and Means        
Paulin
Aye
Jensen
Aye
Dinowitz
Aye
Byrnes
Aye
Gunther
Aye
Gandolfo
Aye
Rosenthal L 
Aye
Mikulin
Aye
Hevesi
Aye
Blumencranz
Aye
Steck
Aye
Bendett
Aye
Braunstein
Aye
Gray
Aye
Solages
Aye
McGowan
Aye
Bichotte Hermel
Aye
Sayegh
Aye
Rosenthal D 
Aye
McDonald
Aye
Reyes
Aye
Gonzalez-Rojas
Aye
Rajkumar
Aye
Forrest
Aye
Kelles
Aye
Lucas
Aye

Committee:WAYS AND MEANS   Chair:Weinstein      
DATE:05/20/2024AYE/NAY:34/0  Action: Favorable refer to committee Rules        
Weinstein
Aye
Ra
Aye
Glick
Aye
Fitzpatrick
Excused
Pretlow
Aye
Hawley
Aye
Colton
Aye
Blankenbush
Aye
Cook
Aye
Norris
Aye
Aubry
Aye
Brabenec
Aye
Benedetto
Aye
Palmesano
Aye
Weprin
Aye
Walsh
Aye
Ramos
Aye
DeStefano
Aye
Braunstein
Aye
Manktelow
Aye
McDonald
Aye
Smullen
Aye
Rozic
Aye
Dinowitz
Aye
Magnarelli
Aye
Zebrowski
Aye
Bronson
Aye
Dilan
Aye
Seawright
Aye
Hyndman
Aye
Walker
Aye
Bichotte Hermel
Aye
Simon
Aye
Cruz
Aye
Fahy
Aye

Committee:RULES   Chair:Pretlow      
DATE:05/28/2024AYE/NAY:28/0  Action: Favorable         
Heastie
Excused
Barclay
Aye
Weinstein
Aye
Hawley
Aye
Pretlow
Aye
Giglio
Aye
Cook
Aye
Blankenbush
Aye
Glick
Aye
Norris
Aye
Aubry
Excused
Ra
Aye
Dinowitz
Aye
Brabenec
Aye
Colton
Aye
Palmesano
Aye
Magnarelli
Aye
Reilly
Aye
Paulin
Aye
Peoples-Stokes
Aye
Benedetto
Aye
Lavine
Aye
Lupardo
Aye
Zebrowski
Aye
Thiele
Aye
Braunstein
Aye
Dickens
Excused
Davila
Aye
Hyndman
Aye
Rozic
Aye
Bronson
Aye

A04138 Floor Votes:

A04138 Memo:

NEW YORK STATE ASSEMBLY
MEMORANDUM IN SUPPORT OF LEGISLATION
 submitted in accordance with Assembly Rule III, Sec 1(f)



 
BILL NUMBER: A4138A             Revised 5/18/2023
 
SPONSOR: McMahon

 
TITLE OF BILL:
 
An act to amend the public health law, in relation to Down syndrome
diagnosis awareness
 
 
PURPOSE OR GENERAL IDEA OF BILL::
 
Requires health care practitioners to provide up-to-date and evidence-
based information on Down syndrome to pregnant women and parents of
infants who test positive for Down syndrome in a written or alternative
format at the time a Down syndrome screening test has been ordered.
 
 
SUMMARY OF PROVISIONS::

Section 1 amends section 207 of the public health law by creating a Down
syndrome awareness program. It establishes that a health care practi-
tioner who orders tests for a pregnant woman or infant to screen for
Down syndrome will be provided up-to-date and evidence-based information
about Down syndrome, which has been reviewed by medical experts and
national Down syndrome organizations, if such test reveals a positive
result. The bill mandates this information to be provided in a written
or alternative format, to include the following:
 
- life expectancy
 
- the clinical course description
 
- expected intellectual and functional development
 
- available intervention or treatment options
 
- information hotlines specific to Down syndrome
 
- relevant resource centers or clearinghouses
 
- national and local Down syndrome organizations
 
- and any other information the office deems necessary
 
The bill further mandates that the Commissioner follow existing prac-
tices to ensure that information is culturally and linguistically appro-
priate for all recipients, and meet annually with representatives from
the Down syndrome community to ensure such information is current.
 
Section 2 sets the effective date.
 
 
DIFFERENCE BETWEEN ORIGINAL AND AMENDED VERSION (IF APPLICABLE):
 
Click here to enter text
 
 
JUSTIFICATION::
 
Down syndrome is 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.
According to the Centers for Disease Control and Prevention (CDC), about
6,000 babies with Down syndrome are born in the United States each year,
and 1 in every 700 babies in the United States is born with Down
syndrome, making Down syndrome the most common chromosomal condition.
 
Screening for Down syndrome is very common however many healthcare prac-
titioners are not equipped to provide up-to-date relevant information
for parents. By requiring the Health Department to develop educational
materials, health care practitioners can be assured they are providing
the best practices and guidelines to assist a family to understand
living with an individual with Down syndrome.
 
Under this legislation, healthcare practitioners are provided with the
most up-to-date and evidence-based information about Down syndrome, as
well as contact information for not-for-profit organizations across the
State. Families will also receive relevant resources including hotlines
specific to Down syndrome, contact information to national and local
Down syndrome organizations, among many other essential resources. Fami-
lies will inevitably benefit from having such resources accessible
through their doctors.
 
It is imperative that health care practitioners across the State provide
families with as many resources as possible to ensure every child born
with Down syndrome can be adequately cared for by their parents or care-
takers. Children diagnosed with Down syndrome, as well as the families
of such children, deserve the right to have this guidance and assist-
ance.
 
 
PRIOR LEGISLATIVE HISTORY::
 
New bill
 
 
FISCAL IMPLICATIONS FOR STATE AND LOCAL GOVERNMENTS::
 
TBD
 
 
EFFECTIVE DATE:
This act shall take effect.immediately.

A04138 Text:

 
                STATE OF NEW YORK
        ________________________________________________________________________
 
                                         4138--A
 
                               2023-2024 Regular Sessions
 
                   IN ASSEMBLY
 
                                    February 10, 2023
                                       ___________
 
        Introduced by M. of A. McMAHON, WALLACE, CONRAD, SIMON, STIRPE, GUNTHER,
          THIELE,  BRONSON,  HEVESI,  SEAWRIGHT, DICKENS, GONZALEZ-ROJAS, GLICK,
          ZEBROWSKI, CRUZ,  McDONALD,  KELLES,  BENDETT,  McDONOUGH,  DeSTEFANO,
          MORINELLO,  HAWLEY,  J. M. GIGLIO, J. A. GIGLIO, STERN, RAGA, GANDOLFO
          -- read once and referred to the Committee on Mental Health -- commit-
          tee discharged, bill amended, ordered reprinted as amended and  recom-
          mitted to said committee
 
        AN  ACT  to  amend  the  public health 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.   Subdivision 1 of section 207 of the public health law is
     2  amended by adding a new paragraph (h) to read as follows:
     3    (h)(i) A Down syndrome awareness program shall be created  to  provide
     4  up-to-date  and  evidence-based  information  about  Down syndrome, in a
     5  written or alternative format to health care providers who  order  tests
     6  for a pregnant woman or an infant to screen for Down syndrome that shall
     7  include, but not be limited to, the following:
     8    (1)  expected  physical,  developmental, educational, and psychosocial
     9  outcomes;
    10    (2) life expectancy;
    11    (3) the clinical course description;
    12    (4) expected intellectual and functional development;
    13    (5) available intervention or treatment options;
    14    (6) information hotlines specific to Down syndrome;
    15    (7) relevant resource centers or clearinghouses;
    16    (8) national and local Down syndrome organizations; and
    17    (9) any other information the department deems necessary.
    18    (ii) The commissioner shall (1) examine and utilize existing practices
    19  to ensure that the information provided under subparagraph (i)  of  this
    20  paragraph  is  culturally and linguistically appropriate for all recipi-

         EXPLANATION--Matter in italics (underscored) is new; matter in brackets
                              [ ] is old law to be omitted.
                                                                   LBD06931-02-3
        A. 4138--A                          2
 
     1  ents; and (2) meet annually with representatives from the Down  syndrome
     2  community to ensure such information is current.
     3    § 2 This act shall take effect immediately.

A04138 LFIN:

 
NO LFIN

A04138 Chamber Video/Transcript: