NY State Senate Bill 2021-S2163

Senate Bill S2163

2021-2022 Legislative Session

Requires health care practitioners to provide up to date and evidence based information on Down syndrome to parents of infants who have Down syndrome

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Archive: Last Bill Status - In Senate Committee Mental Health Committee

Introduced
- In Committee Assembly
- In Committee Senate
- On Floor Calendar Assembly
- On Floor Calendar Senate
- Passed Assembly
- Passed Senate
Delivered to Governor
Signed By Governor

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Actions

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	Assembly Actions - Lowercase Senate Actions - UPPERCASE
Jan 05, 2022	referred to mental health
Jan 20, 2021	referred to mental health

co-Sponsors

2021-S2163 (ACTIVE) - Details

Current Committee:: Senate Mental Health
Law Section:: Mental Hygiene Law
Laws Affected:: Add §13.44, Ment Hyg L
Versions Introduced in Other Legislative Sessions:: 2017-2018: S7345
2019-2020: S197
2023-2024: S593

2021-S2163 (ACTIVE) - Summary

Requires health care practitioners to provide a written or an alternative format of up to date and evidence based information on Down syndrome to pregnant women and parents of infants who test positive for Down syndrome.

2021-S2163 (ACTIVE) - Sponsor Memo

                                
 
BILL NUMBER: S2163

SPONSOR: ORTT
 
TITLE OF BILL:

An act to amend the mental hygiene law, in relation to Down syndrome
diagnosis awareness

 
PURPOSE:

To require information on Down syndrome be provided to a pregnant woman,
parent, or expectant parent of any infant or fetus diagnosed with Down
syndrome.

 
SUMMARY OF PROVISIONS:

Add a new section 13.43 of the mental hygiene law to state that a health
care practitioner who orders tests of a pregnant woman or infant to
screen for Down syndrome shall provide information if a positive test is
revealed.

Such information includes up to date and evidence based information
reviewed by medical experts and national Down syndrome organizations and
may include expected physical, developmental, education and psychosocial
outcomes, life expectancy, clinical course description, expected intel-
lectual and functional development, and treatment options. Information
can include contact information for support groups, hotlines, and other
relevant contact information.

This information shall be provide by the commissioner in writing, and
also be posted on the Office's website.

Section 2 is the effective date.

 
JUSTIFICATION:

Down syndrome is the most common genetic disease in the United States
with 1 in 700 babies born with this condition. Prenatal screening has
been available since the 1970's. This legislation seeks to provide
information related to the positive outcomes the life an individual with
Down syndrome can live. There currently is not information readily
available to be provided to families about the positive life outcomes
one can expect in the life of an individual with Down syndrome.

 
FISCAL IMPLICATIONS:

Minimal.

 
LEGISLATIVE HISTORY:

S.197 of 2019/20, Referred to Mental Health and Developmental Disabili-
ties
S.7345 of 2018, Advanced to Third Reading.

 
EFFECTIVE DATE:
This act shall take effect on the ninetieth day.

2021-S2163 (ACTIVE) - Bill Text download pdf

                            
 
                     S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                   2163
 
                        2021-2022 Regular Sessions
 
                             I N  S E N A T E
 
                             January 20, 2021
                                ___________
 
 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:

   Section 1. The mental hygiene law is amended by adding a  new  section
 13.44 to read as follows:
 § 13.44 DOWN SYNDROME DIAGNOSIS AWARENESS.
   (A)  FOR  PURPOSES OF THIS SECTION, THE FOLLOWING TERMS SHALL HAVE THE
 FOLLOWING MEANINGS:
   (1) "HEALTH CARE  PRACTITIONER"  MEANS  A  MEDICAL  PROFESSIONAL  THAT
 PROVIDES PRENATAL OR POSTNATAL CARE AND ADMINISTERS OR REQUESTS ADMINIS-
 TRATION  OF A DIAGNOSTIC OR SCREENING TEST TO A PREGNANT WOMAN OR INFANT
 THAT DETECTS FOR DOWN SYNDROME; AND
   (2) "DOWN SYNDROME" MEANS A CHROMOSOMAL CONDITION CAUSED BY  AN  ERROR
 IN  CELL  DIVISION  THAT  RESULTS IN THE PRESENCE OF AN EXTRA OR PARTIAL
 COPY OF CHROMOSOME TWENTY-ONE.
   (B) A HEALTH CARE PRACTITIONER WHO ORDERS TESTS FOR A  PREGNANT  WOMAN
 OR INFANT TO SCREEN FOR DOWN SYNDROME SHALL PROVIDE THE FOLLOWING INFOR-
 MATION  TO  SUCH  PREGNANT  WOMAN  OR  THE  INFANT'S PARENT IF SUCH TEST
 REVEALS A POSITIVE RESULT:
   (1) UP-TO-DATE AND EVIDENCE-BASED INFORMATION ABOUT DOWN SYNDROME THAT
 HAS BEEN REVIEWED BY MEDICAL EXPERTS AND NATIONAL DOWN  SYNDROME  ORGAN-
 IZATIONS.  THE  INFORMATION MUST BE PROVIDED IN A WRITTEN OR AN ALTERNA-
 TIVE FORMAT AND MUST INCLUDE THE FOLLOWING:
   (I) EXPECTED PHYSICAL, DEVELOPMENTAL,  EDUCATIONAL,  AND  PSYCHOSOCIAL
 OUTCOMES;
   (II) LIFE EXPECTANCY;
   (III) THE CLINICAL COURSE DESCRIPTION;
   (IV) EXPECTED INTELLECTUAL AND FUNCTIONAL DEVELOPMENT;
 
  EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                       [ ] is old law to be omitted.

                                                            LBD07397-01-1

 S. 2163                             2
 
   (V)  TREATMENT OPTIONS AVAILABLE FOR THE PARTICULAR SYNDROME FOR WHICH
 THE TEST WAS POSITIVE; AND
   (VI) ANY OTHER INFORMATION THE OFFICE DEEMS NECESSARY.
   (2)  CONTACT  INFORMATION  FOR  NONPROFIT  ORGANIZATIONS  THAT PROVIDE
 INFORMATION AND SUPPORT SERVICES FOR DOWN  SYNDROME  INCLUDING  BUT  NOT
 LIMITED TO:
   (I) INFORMATION HOTLINES SPECIFIC TO DOWN SYNDROME;
   (II) RELEVANT RESOURCE CENTERS OR CLEARINGHOUSES; AND
   (III) NATIONAL AND LOCAL DOWN SYNDROME ORGANIZATIONS.
   (C)  (1)  THE COMMISSIONER SHALL PROVIDE WRITTEN INFORMATION TO HEALTH
 CARE PRACTITIONERS  NECESSARY  TO  IMPLEMENT  SUBDIVISION  (B)  OF  THIS
 SECTION.
   (2)  ADDITIONALLY, THE COMMISSIONER SHALL POST SUCH INFORMATION ON THE
 OFFICE'S WEBSITE.
   (3) THE COMMISSIONER SHALL FOLLOW EXISTING PRACTICES  TO  ENSURE  THAT
 THE  INFORMATION  IS  CULTURALLY  AND LINGUISTICALLY APPROPRIATE FOR ALL
 RECIPIENTS.
   (4) ANY LOCAL OR NATIONAL  ORGANIZATION  THAT  PROVIDES  EDUCATION  OR
 SERVICES  RELATED  TO  DOWN  SYNDROME, MAY REQUEST THAT THE COMMISSIONER
 INCLUDE THE ORGANIZATION'S INFORMATIONAL MATERIAL AND  CONTACT  INFORMA-
 TION  ON  THE OFFICE'S WEBSITE. ONCE A REQUEST IS MADE, THE COMMISSIONER
 MAY ADD THE INFORMATION TO THE WEBSITE.
   § 2. This act shall take effect on the ninetieth day  after  it  shall
 have become a law. Effective immediately, the addition, amendment and/or
 repeal  of  any  rule  or regulation necessary for the implementation of
 this act on its effective date are authorized to be made  and  completed
 on or before such effective date.

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Senate Bill S2163

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Sponsored By

Robert G. Ortt