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.
STATE OF NEW YORK
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8141
2021-2022 Regular Sessions
IN ASSEMBLY
June 16, 2021
___________
Introduced by M. of A. McMAHON -- read once and referred to the Commit-
tee on 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.
LBD11006-04-1
A. 8141 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 § 2. This act shall take effect on the one hundred twentieth day after
19 it shall have become a law. Effective immediately, the addition, amend-
20 ment and/or repeal of any rule or regulation necessary for the implemen-
21 tation of this act on its effective date are authorized to be made and
22 completed on or before such effective date.
