Legislation sponsored by Assemblywoman Gabriela Mosquera to help prepare parents to care for a child with Down Syndrome received final legislative approval unanimously from the full Assembly on Thursday.
“For expectant parents, receiving any type of medical diagnosis about an unborn child can be overwhelming,” said Mosquera (D-Camden/Gloucester). “By arming parents with extensive information on Down syndrome, hopefully we can prepare them for any unexpected challenges that lie ahead or any inherent learning curves they might face. Knowing they are not alone and that there are many resources out there can make all the difference in helping them care for their child.”
The bill (A-3233) would require the state Department of Health to make available to any person who renders prenatal care, postnatal care, or genetic counseling to parents who receive a prenatal or postnatal diagnosis of Down syndrome the following:
1) up-to-date, evidence-based, written information about Down syndrome that has been reviewed by medical experts and national Down syndrome organizations, including physical developmental, educational, and psychosocial outcomes;
2) life expectancy, clinical course, and intellectual and functional development and treatment options; and
3) contact information regarding telephone and online assistance and support services, including information hotlines specific to Down syndrome, resource centers or clearinghouses, and other education and support programs.
The department is also required to make the requisite information available on its website and may also make such information available to any other person who has received a positive Down syndrome test result.
The bill requires that the information be culturally and linguistically appropriate and be made in available in English and Spanish in a manner that is easily understandable for women receiving a positive prenatal diagnosis or for the family of a child receiving a postnatal diagnosis of Down syndrome.
The bill also requires a physician, health care provider, nurse midwife, or genetic counselor who renders prenatal care, postnatal care, or genetic counseling, to provide an expectant or new parent, upon the receipt of a positive test result for Down syndrome, with the information on Down syndrome, which is required to be posted on the department’s Internet website under this bill.
The bill now heads to the governor’s desk.