SB0987sam001 99TH GENERAL ASSEMBLY

Sen. Christine Radogno

Filed: 3/19/2015

09900SB0987sam001 LRB099 05579 JLK 32990 a

AMENDMENT TO SENATE BILL 987

AMENDMENT NO. ______. Amend Senate Bill 987 by replacing everything after the enacting clause with the following:

"Section 1. Short title. This Act may be known as the Down Syndrome Information and Awareness Act.

Section 5. Definitions. As used in this Act:

"Clearinghouse" means a central institution or agency for the collection, maintenance, and distribution of materials related to Down syndrome.

"Down syndrome" means a chromosomal condition caused by an error in cell division that results in the presence of an extra whole or partial copy of chromosome 21.

"First call program" means a volunteer group of individuals who make themselves available to parents of children newly diagnosed with Down syndrome.

"Health care provider" means any physician, hospital facility, or other person that is licensed or otherwise authorized to deliver health care services.

Section 10. Down syndrome information. The Department shall make available up-to-date, evidence-based written information about Down syndrome that has been reviewed by medical experts and State and national Down syndrome organizations, including physical, developmental, educational and psychosocial outcomes, life expectancy, clinical course, intellectual and functional development, and treatment options. The written information shall include contact information regarding first call programs and clearinghouses, national, State and local Down syndrome organizations, and other educational and support programs. The Department shall make this information available to persons who render prenatal care, postnatal care, or genetic counseling to parents who receive a prenatal or postnatal diagnosis of Down syndrome. The Department shall also make this information available to any person who has received a positive test result from a test for Down syndrome. The information provided under this Section shall be culturally and linguistically appropriate for a woman receiving a positive prenatal diagnosis of Down syndrome and for the family of a child receiving a postnatal diagnosis of Down syndrome.

Section 15. Distribution of information to parents. A health care provider who renders prenatal or postnatal care, or genetic counselor who renders genetic counseling shall, upon receipt of a positive test result from a test for Down syndrome, provide the expectant or new parent with the information provided by the Department under Section 10 of this Act.".