STATE OF NEW YORK ________________________________________________________________________ 4138 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 -- read once and referred 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 with either an extra 11 chromosome twenty-one, in whole or in part, or an effective trisomy for 12 chromosome twenty-one. Trisomy twenty-one is the medical term for Down 13 syndrome. 14 (b) A health care practitioner who orders tests for a pregnant woman 15 or infant to screen for Down syndrome shall provide the following infor- 16 mation to such pregnant woman or the infant's parent if such test 17 reveals a positive result: 18 (1) Up-to-date and evidence-based information about Down syndrome that 19 has been reviewed by medical experts and national Down syndrome organ- 20 izations. The information must be provided in a written or an alterna- 21 tive format and must include the following: 22 (i) expected physical, developmental, educational, and psychosocial 23 outcomes; 24 (ii) life expectancy; EXPLANATION--Matter in italics (underscored) is new; matter in brackets [ ] is old law to be omitted. LBD06931-01-3

A. 4138 2 1 (iii) the clinical course description; 2 (iv) expected intellectual and functional development; 3 (v) treatment options available for the particular syndrome for which 4 the test was positive; and 5 (vi) any other information the office deems necessary. 6 (2) Contact information for nonprofit organizations that provide 7 information and support services for Down syndrome including but not 8 limited to: 9 (i) information hotlines specific to Down syndrome; 10 (ii) relevant resource centers or clearinghouses; and 11 (iii) national and local Down syndrome organizations. 12 (c) (1) The commissioner shall provide written information to health 13 care practitioners necessary to implement subdivision (b) of this 14 section. 15 (2) Additionally, the commissioner shall post such information on the 16 office's website. 17 (3) The commissioner shall follow existing practices to ensure that 18 the information is culturally and linguistically appropriate for all 19 recipients. 20 (4) The commissioner shall meet annually with representatives from the 21 Down syndrome community to ensure the information that is made available 22 by the department is current. 23 § 2. This act shall take effect on the one hundred twentieth day after 24 it shall have become a law. Effective immediately, the addition, amend- 25 ment and/or repeal of any rule or regulation necessary for the implemen- 26 tation of this act on its effective date are authorized to be made and 27 completed on or before such effective date.

Relates to Down syndrome diagnosis awareness

What's Happening

Why It Matters