BILL NUMBER: S6867

SPONSOR: MANNION
 
TITLE OF BILL:

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

 
SUMMARY OF PROVISIONS:

Section 1. Defines "health care practitioners" and "Down syndrome" for
purposes of this section. Establishes that a health care practitioner
who orders tests for a pregnant woman or infant to screen for Down
syndrome must provide up-to-date and evidence-based information about
Down syndrome, which has been reviewed by medical experts and national
Down syndrome organizations, if such test reveals a positive result.
Mandates this information to be provided in a written or alternative
format, and the Commissioner post such information on the office's
website, which includes the following:

-Expected physician, developmental, education and psychosocial outcomes
-Life expectancy
              

-Clinical course description
-Expected intellectual and functional development
-Treatment options available for the particular syndrome for which the
test was positive
-Any other information the office deems necessary
-Contact information for not-for-profit organizations that provide
information and support services for Down syndrome.

Mandates that the Commissioner follow existing practices to ensure that
information is culturally and linguistically appropriate for all recipi-
ents, and that the Commissioner provide written information to health
practitioners necessary to implement this section. Establishes that 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.

Section 2. Effective date

 
JUSTIFICATION:

Down syndrome is defined as a chromosomal condition caused by an error
in cell division, which results in the presence of an extra or partial
copy of chromosome 21. According to the Centers for Disease Control and
Prevention (CDC), about 6,000 babies with Down syndrome are born in the
United States each year, and 1 in every 700 babies in the United States
is born with Down syndrome, making Down syndrome the most common chromo-
somal condition.

Screening for down syndrome is very common however many healthcare prac-
titioners are not equipped to provide up to date relevant information
for parents . By requiring OPWDD to develop educational materials,
health care practitioners can be assured they are providing the best
practices and guidelines to assist a family to understand living with an
individual with down syndrome.


Under this legislation, healthcare practitioners are required to provide
families with the most up-to-date and evidence based information about
down syndrome as well as the contact information for not-for-profit
organizations across the State. Families will also receive relevant
resources including hotlines specific to down syndrome, contact informa-
tion to national and local down syndrome organizations, among many other
essential resources.The Office for People with Developmental Disabili-
ties (OPWDD) would be required to post this information on the office's
website. Families will inevitably benefit from having such resources
accessible online and through their doctors.

It is imperative that health care practitioners across the State provide
families with as many resources as possible to ensure every New Yorker
whose child is born with down syndrome can be adequately cared for by
their parents or caretakers. Children diagnosed with down syndrome as
well as the families of such children deserve the right to have guidance
and assistance in caring for their child.

 
FISCAL IMPLICATIONS:

TBD

 
EFFECTIVE DATE:
One hundred twentieth day after it shall have become a law. Effective
immediately, the addition, amendment and/or repeal of any rule or regu-
lation necessary for the implementation of this act on its effective
date are authorized to be made and completed on or before such effective
date.