NY State Senate Bill 2019-S197

Senate Bill S197

2019-2020 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

download bill text pdf

Archive: Last Bill Status - In Senate Committee Mental Health And Developmental Disabilities 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

Please enter your contact information

First Name

Last Name

Email Address

A valid email address is required.

Home address is used to determine the senate district in which you reside. Your support or opposition to this bill is then shared immediately with the senator who represents you.

Optional services from the NY State Senate:

Create an account. An account allows you to officially support or oppose key legislation, sign petitions with a single click, and follow issues, committees, and bills that matter to you. When you create an account, you agree to this platform's terms of participation.

Include a custom message for your Senator? (Optional)

Enter a message to your senator. Many New Yorkers use this to share the reasoning behind their support or opposition to the bill. Others might share a personal anecdote about how the bill would affect them or people they care about.

Actions

View Actions

	Assembly Actions - Lowercase Senate Actions - UPPERCASE
Jan 08, 2020	referred to mental health and developmental disabilities
Jan 09, 2019	referred to mental health and developmental disabilities

2019-S197 (ACTIVE) - Details

Current Committee:: Senate Mental Health And Developmental Disabilities
Law Section:: Mental Hygiene Law
Laws Affected:: Add §13.44, Ment Hyg L
Versions Introduced in Other Legislative Sessions:: 2017-2018: S7345
2021-2022: S2163
2023-2024: S593

2019-S197 (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.

2019-S197 (ACTIVE) - Sponsor Memo

                                
 
BILL NUMBER: S197

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 p6sitive life outcomes
one can expect in the life of an individual with Down syndrome.

 
FISCAL IMPLICATIONS:

Minimal.

 
LEGISLATIVE HISTORY:

S. 7345 of 2018, Advanced to Third Reading.

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

2019-S197 (ACTIVE) - Bill Text download pdf

                            
 
                     S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                    197
 
                        2019-2020 Regular Sessions
 
                             I N  S E N A T E
 
                                (PREFILED)
 
                              January 9, 2019
                                ___________
 
 Introduced  by  Sen.  ORTT  --  read twice and ordered printed, and when
   printed to be committed to the Committee on Mental Health and Develop-
   mental Disabilities
 
 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;

  EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets

                       [ ] is old law to be omitted.
                                                            LBD02868-01-9

 S. 197                              2
 
   (III) THE CLINICAL COURSE DESCRIPTION;
   (IV) EXPECTED INTELLECTUAL AND FUNCTIONAL DEVELOPMENT;
   (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.

Comments

Open Legislation is a forum for New York State legislation. All comments are subject to review and community moderation is encouraged.

Comments deemed off-topic, commercial, campaign-related, self-promotional; or that contain profanity, hate or toxic speech; or that link to sites outside of the nysenate.gov domain are not permitted, and will not be published. Attempts to intimidate and silence contributors or deliberately deceive the public, including excessive or extraneous posting/posts, or coordinated activity, are prohibited and may result in the temporary or permanent banning of the user. Comment moderation is generally performed Monday through Friday. By contributing or voting you agree to the Terms of Participation and verify you are over 13.

Create an account. An account allows you to sign petitions with a single click, officially support or oppose key legislation, and follow issues, committees, and bills that matter to you. When you create an account, you agree to this platform's terms of participation.