What's happening
This bill requires healthcare providers to give information and resources to patients after a positive Down syndrome diagnosis.
Why it matters
Ensures patients and families receive comprehensive, evidence-based information. about Down syndrome at the time of diagnosis, including expected outcomes, treatment options, and life expectancy, which may help reduce uncertainty and support informed decision-making.
Directs healthcare providers to share contact details for support organizations and hotlines. , making it easier for families to connect with community resources, advocacy groups, and peer support soon after a diagnosis.
Mandates that information be culturally and linguistically appropriate. , aiming to reduce disparities and ensure that all patients—regardless of background or language—have access to understandable and relevant resources.
Invites Down syndrome organizations to have their materials included on official state websites. , potentially increasing the visibility and reach of advocacy groups and ensuring the information provided is current and community-approved.
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Who cares
Pregnant women and parents of infants with positive Down syndrome test results
They would receive current, evidence-based information about Down syndrome and contact information for nonprofit support services.
Prenatal and postnatal health care practitioners
Practitioners ordering Down syndrome screening tests would have to provide the required information when a test returns a positive result.
State mental hygiene officials
The commissioner would have to supply implementation materials to practitioners, post the information online and follow existing practices to ensure it is culturally and linguistically appropriate.
Down syndrome education and service organizations
Local and national organizations could ask the commissioner to include their informational materials and contact information on the office’s website.
Headline styles
Provide Down Syndrome Info
Plain English, a few words. Used as the page title.
Sponsors
No co-sponsors yet.
History
- Referred to mental health and developmental disabilities
- Referred to mental health and developmental disabilities
Full text
2 pagesUnderlined is new[Struck] is removedOfficial text on nysenate.gov ↗
STATE OF NEW YORK
197
2019-2020 Regular Sessions
IN SENATE (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 Developmental 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 Assembly, 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 administration 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 information 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 organizations. The information must be provided in a written or an alternative 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 information 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.
Reflowed for reading: line numbers and page breaks removed. Cite the official text.
Sponsor's memo
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.
Summaries, headlines and scores are AI-generated from the official bill text. How we score bills. Source: NYS Open Legislation.